Wow, its been a while since my last post. I hardly know where to start on the Bubs catch up.
We celebrated Thanksgiving in classic Grunsted style by hanging out at the hospital. Bobby had a tonsilectomy/adenoidectomy and tear duct probe. The original hospitalization was supposed to be overnight but we were there three days waiting for Bobby's oxygen saturation levels to stabilize. Spending a holiday in the hospital is a definite downer (although the mood was lightened by our good friends the Medinas who brought us Thanksgiving dinner) but its good to have the surgery behind us. Hopefully he'll be healthier for the rest of the winter.
Since the surgery, we've been working to increase Bobby's food intake. His weight has stalled a bit. We've tried increasing the calorie count of the food he's on, but its given him bad diarrhea (or frequent blow outs, as we're fond of saying) and kept him up at night. So, we're back to his old formula formulation, planning to increase the volume he eats.
Lastly on the medical front, we've had two ER visits this week. Bobby's Mic-Key button came out Saturday night. Valerie went to comfort a crying Bubs at 3 am and found his sheets soaked. Unfortunately, the tube had been out so long that his g-tube hold had started to close so we couldn't replace it ourselves. Valerie volunteered for hospital duty and five hours later Bobby was home with a smaller button.
Then yesterday I got a call from daycare after his afternoon nap that he had turned blue around his eyes and sweated out his clothes. I'm not sure that he was really blue as in lack of oxygen blue - that has always started at his lips and tongue. But, his teachers are great and I trust them when they say something is wrong, so we went back to the ER. Four hours later we were going home after negative chest x-rays and a good EKG.
Therapy has been slowed some this month by the medical goings ons. Still things are going well. His Developmental Therapist told me that Bobby was beginning to narrow his percent delay, meaning that not only is he progressing, but he is learning at a faster rate than he has in the past.
The Bubs is getting strong! His body feels so much tighter when I toss him into the air - I credit that to all that time he's spent sitting up. He's able to pivot - he uses his legs to turn himself 360 degrees. He is also starting to butt scoot a bit. In the last couple of weeks, he's learned to pull himself into sitting position. He starts on his tummy and then does the splits. He pushes his upper body upright by 'walking' his arms towards his body. Its quite impressive.
Of course, we've gotten some negative feedback from our therapists about this adaptation. I understand that it's not ideal for him to be relying on this position - he needs to stop doing the splits so much and start stabilizing his hips. That said, he is 20 months old. At 20 months, the boy deserves some mobility by whatever means he can achieve it. Goodness knows we've tried hard enough to do things the 'right' way.
Bubsy is getting to be more fun by the day. He is starting to develop a sense of humor and is very conscious of whether or not we are watching him when he makes his silly sounds and gestures. He gives 'five' and enjoys being clapped for. My son the entertainer.
We're having a great Christmas season. Little Lord Bubsleroy is going to get more toys than he needs. I have to start packing up some of his current stuff now. We've seen Santa Claus and shown some curiousity but haven't pulled any hair or beard as I guessed he might. We have a couple more chances this weekend as we're going to a Christmas party for one of our play groups tomorrow and then having Breakfast with Santa at Lambs Farm on Sunday.
12/18/09
11/24/09
Rough Going
It was a tough day for Bubsy. He had a temperature around 99.7 when we got to the hospital, but it seemed to fall after we took a few layers off so we went ahead. The surgeries all went fine - no issues with the tonsils/adenoids and the eye doctor said that the tear ducts opened nicely.
Recovery, however, has been another story. This afternoon Bobby spiked a fever of 102. Dr Billings the ENT thinks it may be because she cleaned up an ear infection during the procedure. We iced him down and he seemed to do better.
My bigger concern is that Bobby couldn't maintain his oxygen saturations (they fell into the 70s) so he's got a cannula. He's not on a lot of oxygen (1.5 liters) but he does have some junk in his lungs. Hopefully its just a bit of mucuous that he can cough out, but of course, my mind immediately goes to the multiple lung collapses he's had post extubation. Hopefully he'll be spared that.
So far the pain has been OK with tylenol. He'll come home with a prescription for Tylenol with Codeine just in case, but Valerie will try to get him through tonight without it because it can lower saturations.
Mama V is on hospital duty tonight. I've already come home to try to get rested for what lies ahead. I'm trying not to jinx us but I'm having visions of Thanksgiving on 5 west. We'll know more in the morning.
Recovery, however, has been another story. This afternoon Bobby spiked a fever of 102. Dr Billings the ENT thinks it may be because she cleaned up an ear infection during the procedure. We iced him down and he seemed to do better.
My bigger concern is that Bobby couldn't maintain his oxygen saturations (they fell into the 70s) so he's got a cannula. He's not on a lot of oxygen (1.5 liters) but he does have some junk in his lungs. Hopefully its just a bit of mucuous that he can cough out, but of course, my mind immediately goes to the multiple lung collapses he's had post extubation. Hopefully he'll be spared that.
So far the pain has been OK with tylenol. He'll come home with a prescription for Tylenol with Codeine just in case, but Valerie will try to get him through tonight without it because it can lower saturations.
Mama V is on hospital duty tonight. I've already come home to try to get rested for what lies ahead. I'm trying not to jinx us but I'm having visions of Thanksgiving on 5 west. We'll know more in the morning.
The (Latest) Big Day
In less than an hour, Bobby was placed under general anesthesia, and had his tonsils and adenoids removed. Dr Billings, Bobby's ENT, just came out to give us the update - Bobby came through with flying colors. However, he did have a nasty left ear infection, which she drained, and now has a new ear tube in place to help with drainage. He'll be sent home with antibiotics (always a good idea for the Bubs) and Tylenol with Codeine. If all goes well, he'll be home some time tomorrow morning.
Right now, we're waiting on the opthamology procedure with Dr Hawke Yoon. I remember when we first met Dr Yoon - he skipped into the examination room. Also, it's nearly impossible to refer to him only as Dr Yoon - he is such a fun guy with such a great name - he will always be Doctor Hawke Yoon to me.
Right now, we're waiting on the opthamology procedure with Dr Hawke Yoon. I remember when we first met Dr Yoon - he skipped into the examination room. Also, it's nearly impossible to refer to him only as Dr Yoon - he is such a fun guy with such a great name - he will always be Doctor Hawke Yoon to me.
11/23/09
One Tough Truck!
Tomorrow is Bobby's TAD surgery (tonsils, adenoids, and eye ducts). Poor little guy is covered with scars from his journey thus far. I get sad thinking about what he's been through and yet am so thankful for the years that the surgeons have given him and us. So far they've rerouted his venous system and wrapped his stomach around his esophagus. How resilient is the human body? How amazing can modern medicine be?
10/30/09
10/4/09
9/28/09
The List
I read an article today about Rosanne Cash's latest album - The List. When she was 18 her dad gave her a list of the 100 greatest country and western songs of all time. She just recorded an album with 13 of those songs.
I love the story of how the album came to be. To me, music is one of the greatest gifts we can give our children. Of course, few of us can aspire to the legacy of Johnny Cash, and in my case, I'm not even in tune enough to teach Bobby how to sing on key. But I can share my love of music.
My joy in music stems from childhood, so its only fair to pass on the tradition. I remember riding around in my dad's car listening to the local country station. We listened to Merle Haggard, Loretta Lynn, George Jones, all the greats. No wonder then that Bobby spent many of his early days - days when he was weak from congestive heart failure - listening to the classic country station on TV. He didn't care much for the other stations, but the old time country soothed him to sleep.
My mom listened to classical music, something I never understood. What was the point of music without words? But she gave me a different kind of musical gift. One year during Christmas mass she noticed that I wasn't singing and asked me why. "I can't sing," I told her.
"God gave you that voice and He deserves to hear it," she answered.
That was a revelation. God gave me the voice and I should use it? Not worry if my voice is flat? Excellent! I started singing. I sang off key. I sang the wrong words to songs. But I sang. All the time.
When my parents died, music was my solace. I spent the summer after my dad died playing "Fire and Rain" and "Far Side Banks of Jordan" over and over and over again. When my mom died I played "Angel" by Sarah McLachlan. Over and over and over again.
So, its no surprise that, upon learning that Bobby had a heart condition and most likely had Down Syndrome, I turned to music. Not knowing what else to do for my boy I sang this song into Valerie's tummy every night:
Twinkle Twinkle Little Prince
I loved you when God made you and I'll love you ever since
You're the apple of your mama's eye
You're the golden son, my sweetie pie
Twinkle Twinkle Little Prince
I loved you when God made you and I'll love you ever since.
I spent days making Bobby a mixed tape to welcome him into the world, and, not coincidentally, introduced him to the music his mamas love. These songs expressed the things I wanted Bobby to know before he came into the world - that he was perfect just as he was; that he was coming to mamas who had fierce love for him. I wanted him to know that he was welcome in this world; that while it wouldn't be easy to have Down Syndrome, in the end, God and his mamas would watch over him. And I wanted him see the beauty of his own little spirit - the light that was coming to change our world. We played it in the car in the months leading up to his birth and we play it to this day.
River Deep, Mountain High - Tina Turner
Sweet Home Chicago - Robert Johnson
Don't You Worry 'Bout a Thing - Stevie Wonder
You Were Made For Me - Sam Cooke
Everyday People - Sly and the Family Stone
Loves me Like a Rock - Allison Krauss & the Cox Family
Shine - Dolly Parton
Keep Me God - Iris Dement
Something's Gotta Hold on Me - Etta James
Wonderful World, Beautiful People - Jimmy Cliff
Whole Lotta Shakin' Goin' On - Big Maybelle
To Zion - Lauryn Hill
Bridging the Gap - Nas
Respect Yourself - Staple Singers
Sweet Thing - Van Morrison
Everybody Wants to Be a Cat
I spent the first scary year of Bobby's life singing. During the first few weeks, when he was gassy and couldn't get relief, I wrote this song for him, singing and swaying until he fell asleep:
Bobby Bear
Bobby Bear
It's no fun with gas in there
Go ahead and make a fart
You can't finish until you start
I sang to him through many a medical procedure, trying to take his mind off the indignity of the echocardiogram wand or the probing stethoscope. I sang familiar tunes with new words, words to replace lyrics I didn't like, or words that simply were more appropriate for the occasion:
Rock a bye baby, in the tree top
When the wind blows, the cradle will rock
When the bow breaks, nothing happens at all
Because mama and mama will not let you fall
I sang because I didn't know what else to do. I just wanted him to know that mama was there, even when he was stuck full of needles and tubes, even when I couldn't hold him. And the beautiful, magical thing of it is, it worked. He and I have one very special song, a song I have sung to him thousands of times. It always soothes him.
You are my sunshine
My s-o-n shine
You make me happy
oh, every day
I hope you know dear
that I adore you
and in my heart
I hope you know you'll stay
The other night, dear
as I lay sleeping
I dreamt I held you
in my arms
when I awoke, dear
my dream came true, dear
I'll hold you tight
try to protect you from all harm
Now, as he gets bigger and stronger, Bobby shows us that his love for music rivals my own. He plays the drums; he shakes the maracas; he shakes his shakers; he rings bells. He and I take a music class once a week. Each night when I pick him up from daycare we listen to the class CD. Driving home I sing and he yells and giggles, singing along too. Neither one of us in tune and neither one of us cares. It's so rock and roll I can hardly stand it.
I love the story of how the album came to be. To me, music is one of the greatest gifts we can give our children. Of course, few of us can aspire to the legacy of Johnny Cash, and in my case, I'm not even in tune enough to teach Bobby how to sing on key. But I can share my love of music.
My joy in music stems from childhood, so its only fair to pass on the tradition. I remember riding around in my dad's car listening to the local country station. We listened to Merle Haggard, Loretta Lynn, George Jones, all the greats. No wonder then that Bobby spent many of his early days - days when he was weak from congestive heart failure - listening to the classic country station on TV. He didn't care much for the other stations, but the old time country soothed him to sleep.
My mom listened to classical music, something I never understood. What was the point of music without words? But she gave me a different kind of musical gift. One year during Christmas mass she noticed that I wasn't singing and asked me why. "I can't sing," I told her.
"God gave you that voice and He deserves to hear it," she answered.
That was a revelation. God gave me the voice and I should use it? Not worry if my voice is flat? Excellent! I started singing. I sang off key. I sang the wrong words to songs. But I sang. All the time.
When my parents died, music was my solace. I spent the summer after my dad died playing "Fire and Rain" and "Far Side Banks of Jordan" over and over and over again. When my mom died I played "Angel" by Sarah McLachlan. Over and over and over again.
So, its no surprise that, upon learning that Bobby had a heart condition and most likely had Down Syndrome, I turned to music. Not knowing what else to do for my boy I sang this song into Valerie's tummy every night:
Twinkle Twinkle Little Prince
I loved you when God made you and I'll love you ever since
You're the apple of your mama's eye
You're the golden son, my sweetie pie
Twinkle Twinkle Little Prince
I loved you when God made you and I'll love you ever since.
I spent days making Bobby a mixed tape to welcome him into the world, and, not coincidentally, introduced him to the music his mamas love. These songs expressed the things I wanted Bobby to know before he came into the world - that he was perfect just as he was; that he was coming to mamas who had fierce love for him. I wanted him to know that he was welcome in this world; that while it wouldn't be easy to have Down Syndrome, in the end, God and his mamas would watch over him. And I wanted him see the beauty of his own little spirit - the light that was coming to change our world. We played it in the car in the months leading up to his birth and we play it to this day.
River Deep, Mountain High - Tina Turner
Sweet Home Chicago - Robert Johnson
Don't You Worry 'Bout a Thing - Stevie Wonder
You Were Made For Me - Sam Cooke
Everyday People - Sly and the Family Stone
Loves me Like a Rock - Allison Krauss & the Cox Family
Shine - Dolly Parton
Keep Me God - Iris Dement
Something's Gotta Hold on Me - Etta James
Wonderful World, Beautiful People - Jimmy Cliff
Whole Lotta Shakin' Goin' On - Big Maybelle
To Zion - Lauryn Hill
Bridging the Gap - Nas
Respect Yourself - Staple Singers
Sweet Thing - Van Morrison
Everybody Wants to Be a Cat
I spent the first scary year of Bobby's life singing. During the first few weeks, when he was gassy and couldn't get relief, I wrote this song for him, singing and swaying until he fell asleep:
Bobby Bear
Bobby Bear
It's no fun with gas in there
Go ahead and make a fart
You can't finish until you start
I sang to him through many a medical procedure, trying to take his mind off the indignity of the echocardiogram wand or the probing stethoscope. I sang familiar tunes with new words, words to replace lyrics I didn't like, or words that simply were more appropriate for the occasion:
Rock a bye baby, in the tree top
When the wind blows, the cradle will rock
When the bow breaks, nothing happens at all
Because mama and mama will not let you fall
I sang because I didn't know what else to do. I just wanted him to know that mama was there, even when he was stuck full of needles and tubes, even when I couldn't hold him. And the beautiful, magical thing of it is, it worked. He and I have one very special song, a song I have sung to him thousands of times. It always soothes him.
You are my sunshine
My s-o-n shine
You make me happy
oh, every day
I hope you know dear
that I adore you
and in my heart
I hope you know you'll stay
The other night, dear
as I lay sleeping
I dreamt I held you
in my arms
when I awoke, dear
my dream came true, dear
I'll hold you tight
try to protect you from all harm
Now, as he gets bigger and stronger, Bobby shows us that his love for music rivals my own. He plays the drums; he shakes the maracas; he shakes his shakers; he rings bells. He and I take a music class once a week. Each night when I pick him up from daycare we listen to the class CD. Driving home I sing and he yells and giggles, singing along too. Neither one of us in tune and neither one of us cares. It's so rock and roll I can hardly stand it.
9/15/09
Daycare, Boogers, and Farts
Bobby has been in daycare for six days now and things are going well - much better than I even hoped.
The staff has been very willing to learn how to do his feeds. The g-tube itself is pretty straightforward, the hard part with Bobby is dealing with the wretching. When he has air in his tummy or sour stomach, he can't burp or vomit much. So the g-tube has to be opened and allowed to empty itself of the offending air or gastric juice. And this all has to be done while he's screaming and thrashing.
But, the teachers have taken it on and taken it in stride. Plus, they really like Bubs. He is a little sugar bear. When he likes you, he throws his arms out to the side as far as he can and then exuberantly throws them around your neck. If you're lucky, you might get a little smoochie (open mouth) on the chin. And when he cuddles, well the boy knows how to lean in and give some love. It's unbeatable.
The other children are a bit overwhelming for him at times, but for the most part he is content, watching them crawl and play (although there was one little incident of hair pulling) This, of course, is just what we want - Bubs seeing the possibility of mobility. Today he started sitting with the children at the lunch table, not to eat, but to see how much fun eating is.
So far he's sitting up most of his time on the floor. We need to give him more tummy time to work on the crawling, but I'm really impressed that he can sit up as long as he can. Its only been since August that he could sit at all and now he can sit up for an hour.
All this time sitting has had a wonderful, unexpected side effect - the wretching is getting better. First of all, with his new abs of steel, developed from long bouts of sitting, he can control his inner workings better and coughs that used to lead to wretching are now just coughs. No horrible pain, no meltdowns. Just coughs.
Second, as a bonus to his new physique, he has learned that when he has air in his tummy, he can draw his knees to his chest, bare down, and rip a manly little fart. He has never been able to fart pain free - the straining always led to wretching and screaming and then venting through a tube. Pooping? That was a horrible process where he'd strain and wretch, we'd let the air out of his tummy and then he'd lose the pressue he needed to pass the poo, so we'd have to start the process all over again. Now, things are getting better every day. Plus, and maybe this something only a mama can love, but he is so cute when he draws up his little legs and pumps out the little boy poots.
So, I give daycare credit for the improved tummy issues. I also credit our new and improved feeding schedule where he gets more time off between feeds. We need to pay a little extra attention to his weight gain, but for now, I'll assume that the fact that I had to box up a pile of outgrown clothing is a good sign that we're on the right track.
But, daycare is not without its down notes. Within seconds of entering the daycare room, Bobby's nose snotted up and has stayed that way since. I'm not sure if its allergies or a cold - Mama V is allergic to nearly everything so I'm guessing it might be the former. Except Mamas V and A have both had colds, so maybe its the latter. Valerie explained to me that I could tell the difference by the translucency of his boogers, but I didn't absorb the information.
Why didn't I absorb it? Because the boogers drive me to distraction. Trying to wipe snot off his nose makes him angry and leaving the snot there grosses me out worse than changing a big blow out. And when he comes in for a kiss - its all I can do to raspberry his neck with full gusto. Sometimes I think I'll just leave it alone, but then I can't stand it when it disappears from his face - did he eat it? Is it on me? On his bed? I expected a lot of things about this parenting gig - but I never thought about the amount of snot I'd have to wrangle. But, I guess if Bobby can develop a baby six pack and teach himself to fart, I can stomach the snot. Its all about facing life's little challenges.
The staff has been very willing to learn how to do his feeds. The g-tube itself is pretty straightforward, the hard part with Bobby is dealing with the wretching. When he has air in his tummy or sour stomach, he can't burp or vomit much. So the g-tube has to be opened and allowed to empty itself of the offending air or gastric juice. And this all has to be done while he's screaming and thrashing.
But, the teachers have taken it on and taken it in stride. Plus, they really like Bubs. He is a little sugar bear. When he likes you, he throws his arms out to the side as far as he can and then exuberantly throws them around your neck. If you're lucky, you might get a little smoochie (open mouth) on the chin. And when he cuddles, well the boy knows how to lean in and give some love. It's unbeatable.
The other children are a bit overwhelming for him at times, but for the most part he is content, watching them crawl and play (although there was one little incident of hair pulling) This, of course, is just what we want - Bubs seeing the possibility of mobility. Today he started sitting with the children at the lunch table, not to eat, but to see how much fun eating is.
So far he's sitting up most of his time on the floor. We need to give him more tummy time to work on the crawling, but I'm really impressed that he can sit up as long as he can. Its only been since August that he could sit at all and now he can sit up for an hour.
All this time sitting has had a wonderful, unexpected side effect - the wretching is getting better. First of all, with his new abs of steel, developed from long bouts of sitting, he can control his inner workings better and coughs that used to lead to wretching are now just coughs. No horrible pain, no meltdowns. Just coughs.
Second, as a bonus to his new physique, he has learned that when he has air in his tummy, he can draw his knees to his chest, bare down, and rip a manly little fart. He has never been able to fart pain free - the straining always led to wretching and screaming and then venting through a tube. Pooping? That was a horrible process where he'd strain and wretch, we'd let the air out of his tummy and then he'd lose the pressue he needed to pass the poo, so we'd have to start the process all over again. Now, things are getting better every day. Plus, and maybe this something only a mama can love, but he is so cute when he draws up his little legs and pumps out the little boy poots.
So, I give daycare credit for the improved tummy issues. I also credit our new and improved feeding schedule where he gets more time off between feeds. We need to pay a little extra attention to his weight gain, but for now, I'll assume that the fact that I had to box up a pile of outgrown clothing is a good sign that we're on the right track.
But, daycare is not without its down notes. Within seconds of entering the daycare room, Bobby's nose snotted up and has stayed that way since. I'm not sure if its allergies or a cold - Mama V is allergic to nearly everything so I'm guessing it might be the former. Except Mamas V and A have both had colds, so maybe its the latter. Valerie explained to me that I could tell the difference by the translucency of his boogers, but I didn't absorb the information.
Why didn't I absorb it? Because the boogers drive me to distraction. Trying to wipe snot off his nose makes him angry and leaving the snot there grosses me out worse than changing a big blow out. And when he comes in for a kiss - its all I can do to raspberry his neck with full gusto. Sometimes I think I'll just leave it alone, but then I can't stand it when it disappears from his face - did he eat it? Is it on me? On his bed? I expected a lot of things about this parenting gig - but I never thought about the amount of snot I'd have to wrangle. But, I guess if Bobby can develop a baby six pack and teach himself to fart, I can stomach the snot. Its all about facing life's little challenges.
9/6/09
The Bobby Grunsted Music Explosion
You can teach a boy how to hit a baseball, or how to play the clarinet. But rock gods are not made...rock and roll comes from the heart, baby.
9/4/09
Rum Tum Tumblers
First of all, Bobby continus to feel much, much better since his hospitalization. He is wretching less than he has in the last couple of weeks.
His GI system is so hard to predict. About 7 weeks ago we went to Bobby's GI doctor who was concerned about his lack of weight gain. He'd only gained 100 grams in the past month or so, according to the doctor's scales and growth chart we needed to up his calories. I say according to the doctor's scales and charts because Bobby continued to have fat on his arms and thighs, continued to have a pleasingly plump belly, and was still growing longer. Personally, I think the scales were off, but Bobby had been on the same calorie content for several months and so we figured that it might be time to increase that.
We moved him from formula that is made at 24 calorie/ounce to formula that is 27 calorie/ounce. Bobby is on Elecare, a special broken down formula that reduces issues with his milk intolerance but is otherwise really hard to digest. He did fine with the calorie increase for a week but then started to have increased wretching. He wasn't throwing up - until recently, his nissen fundoplication surgery prevented him from throwing up but he would gag and gasp like he had the dry heaves and his stomach quaked and shook in a way we describe as having a rum tum tumbler. When that happens, we attach a syringe to his feeding tube to allow the contents to drain. This was happening several times a day. Its horribly painful for him and it does result in calorie loss because half the time the contents of the syringe spill on us or him before we can get it back into his tummy.
So, we called Dr. Sentongo, our GI doc, and asked if we could try moving Bobby to soy formula. In the past, he has been able to digest 30 calorie/ounce soy formula. We'd had to stop using it when his milk intolerance worsened and the soy made him sick. Often this intolerance wanes by a baby's first birthday so we thought it was reasonable to give it another shot.
Bobby then had some food allergy tests and everything came back normal. Dr. Sentongo said we were safe to try Bobby on soy because it was very unlikely that it would make him sick. He might still have an intolerance that would take several days to be realized.
Well, we tried Bobby twice on soy. Once it was a low amount of straight soy. The second time it was 1 part soy formula mixed with 4 parts Elecare. Both times he got violently ill within an hour. He heaved so hard that he did throw up.
So, we stopped the soy. We'll try milk-based formula again after he's two. In the meantime, Valerie and I decided that we weren't going to force the 27 calorie Elecare on Bobby. Instead we went back to Dr. Sentongo who recommended that we start upping his volume. At the time, Bobby had an 11 hour feed at night where he got almost 2 ounces an hour. In the day time he had 3 bolus feeds where he got just under 3 ounces in an hour. Yes, that's eating 14 hours a day. In the daytime, he would get 2 hour breaks between meals. I was increasingly unhappy with this schedule, especially since we had also had a well child visit with our pediatrician where Bobby's placement on the growth chart was perfect - 50th percentile in weight and length for a child with Ds, which is where we've tried to keep him since birth.
But we followed the doctor's advice and tried upping the volume of his feeds and that worked for a few days but the wretching started once again. At some point in this period two other things started happening - one, food started coming up, something we thought the nissen would prevent and two, we think Bobby got a stomach virus.
Last weekend his wretching became nearly constant and he spit up large volumes several times (I've never quite decided where the boundary between spit up and vomiting is). We tried substituting formula feeds with Pedialyte to keep him hydrated but I think his body needed extra fluids because of the virus and we just couldn't keep up.
Monday we went to our long ago scheduled GI visit. We told Dr. Sentongo that we thought Bobby needed bowel rest and an IV and asked him to consider admitting Bobby, but the doctor was convinced that the wretching was reflux related and did not require intervention. This even though Bobby vomited all over me in the waiting room so we had evidence of how bad things had gotten. Valerie and I put our foot down about the feeding schedule - he is not going to eat 3 bolus during the day. The doctor sort of agreed, telling us to give him 2.5 bolus during the day. Valerie and I had a quick exchange of looks that confirmed between us that we weren't going to argue with the doctor and we weren't going to follow his advice either. In Monday's visit, the doctor's growth charts and scales showed what has been the case all along - Bobby is growing fine. He was growing fine in the wake of having numerous formula feeds replaced with Pedialyte. He was growing fine even though he was regularly rejecting his feeds.
Needless to say we're frustrated with Dr. Sentongo, especially given that Bobby ended up being hospitalized for dehydration a few hours and two feeds later. We're frustrated that Bobby had the nissen and yet is back on the road to throwing up, even though the surgeons say the operation went as it should.
We've decided to quit relying on the doctors for Bobby's feeding schedule. Certainly their advice matters, but I think they are so focused on getting a certain number of calories in Bubs that they don't think further than that. When we were waiting for Bobby's heart surgery his doctor told us that the minimum caloric intake for a baby with a bad heart was 125 cal/kg. We never got Bobby above 100 cal/kg (8-9 ounces less per day than what the doctor recommended) yet his weight and growth were fine. We believe that if we cut his feeds to 2 times a day plus the overnight feed there's a good chance he will have less come out through spit ups and venting and he'll feel better so we won't have to keep substituting Pedialyte for formula to keep his tummy under control. Our goal is to find the caloric intake that Bobby can comfortably manage and then see how the weight gain goes.
At Monday's appointment we also asked for another endoscopy to make sure everything is OK in Bobby's system. The doctor doesn't think it's necessary - largely because his growth is good. Yet last year, Bobby spent 2 months throwing up because of a bacterial infection called H.Pylori. It was detected in an endoscopy that was only done because he was losing weight. At some point, it seems to me that if Bobby is in so much discomfort from eating three ounces of formula in an hour, we should be able to have a doctor go take another look. Or at least do a biopsy to make sure he doesn't still have H.Pylori or some other bacterial issue that is oh so easy to pick up in the hospital.
So we keep slogging away. We have gotten so much wrong advice in Bobby's GI life that we don't know what to believe right now. I'm thankful that he is growing well and we aren't in a situation where this is becoming life or death. I suppose part of this is patience, waiting for Bobby to get stronger so he can digest more easily. Part of it is putting renewed emphasis on eating purees becaus he may never do great on an all formula diet. But mostly, I think we need to quit listening to all the outside noise and let Bobby's rum tum tum dictate the feeding schedule.
His GI system is so hard to predict. About 7 weeks ago we went to Bobby's GI doctor who was concerned about his lack of weight gain. He'd only gained 100 grams in the past month or so, according to the doctor's scales and growth chart we needed to up his calories. I say according to the doctor's scales and charts because Bobby continued to have fat on his arms and thighs, continued to have a pleasingly plump belly, and was still growing longer. Personally, I think the scales were off, but Bobby had been on the same calorie content for several months and so we figured that it might be time to increase that.
We moved him from formula that is made at 24 calorie/ounce to formula that is 27 calorie/ounce. Bobby is on Elecare, a special broken down formula that reduces issues with his milk intolerance but is otherwise really hard to digest. He did fine with the calorie increase for a week but then started to have increased wretching. He wasn't throwing up - until recently, his nissen fundoplication surgery prevented him from throwing up but he would gag and gasp like he had the dry heaves and his stomach quaked and shook in a way we describe as having a rum tum tumbler. When that happens, we attach a syringe to his feeding tube to allow the contents to drain. This was happening several times a day. Its horribly painful for him and it does result in calorie loss because half the time the contents of the syringe spill on us or him before we can get it back into his tummy.
So, we called Dr. Sentongo, our GI doc, and asked if we could try moving Bobby to soy formula. In the past, he has been able to digest 30 calorie/ounce soy formula. We'd had to stop using it when his milk intolerance worsened and the soy made him sick. Often this intolerance wanes by a baby's first birthday so we thought it was reasonable to give it another shot.
Bobby then had some food allergy tests and everything came back normal. Dr. Sentongo said we were safe to try Bobby on soy because it was very unlikely that it would make him sick. He might still have an intolerance that would take several days to be realized.
Well, we tried Bobby twice on soy. Once it was a low amount of straight soy. The second time it was 1 part soy formula mixed with 4 parts Elecare. Both times he got violently ill within an hour. He heaved so hard that he did throw up.
So, we stopped the soy. We'll try milk-based formula again after he's two. In the meantime, Valerie and I decided that we weren't going to force the 27 calorie Elecare on Bobby. Instead we went back to Dr. Sentongo who recommended that we start upping his volume. At the time, Bobby had an 11 hour feed at night where he got almost 2 ounces an hour. In the day time he had 3 bolus feeds where he got just under 3 ounces in an hour. Yes, that's eating 14 hours a day. In the daytime, he would get 2 hour breaks between meals. I was increasingly unhappy with this schedule, especially since we had also had a well child visit with our pediatrician where Bobby's placement on the growth chart was perfect - 50th percentile in weight and length for a child with Ds, which is where we've tried to keep him since birth.
But we followed the doctor's advice and tried upping the volume of his feeds and that worked for a few days but the wretching started once again. At some point in this period two other things started happening - one, food started coming up, something we thought the nissen would prevent and two, we think Bobby got a stomach virus.
Last weekend his wretching became nearly constant and he spit up large volumes several times (I've never quite decided where the boundary between spit up and vomiting is). We tried substituting formula feeds with Pedialyte to keep him hydrated but I think his body needed extra fluids because of the virus and we just couldn't keep up.
Monday we went to our long ago scheduled GI visit. We told Dr. Sentongo that we thought Bobby needed bowel rest and an IV and asked him to consider admitting Bobby, but the doctor was convinced that the wretching was reflux related and did not require intervention. This even though Bobby vomited all over me in the waiting room so we had evidence of how bad things had gotten. Valerie and I put our foot down about the feeding schedule - he is not going to eat 3 bolus during the day. The doctor sort of agreed, telling us to give him 2.5 bolus during the day. Valerie and I had a quick exchange of looks that confirmed between us that we weren't going to argue with the doctor and we weren't going to follow his advice either. In Monday's visit, the doctor's growth charts and scales showed what has been the case all along - Bobby is growing fine. He was growing fine in the wake of having numerous formula feeds replaced with Pedialyte. He was growing fine even though he was regularly rejecting his feeds.
Needless to say we're frustrated with Dr. Sentongo, especially given that Bobby ended up being hospitalized for dehydration a few hours and two feeds later. We're frustrated that Bobby had the nissen and yet is back on the road to throwing up, even though the surgeons say the operation went as it should.
We've decided to quit relying on the doctors for Bobby's feeding schedule. Certainly their advice matters, but I think they are so focused on getting a certain number of calories in Bubs that they don't think further than that. When we were waiting for Bobby's heart surgery his doctor told us that the minimum caloric intake for a baby with a bad heart was 125 cal/kg. We never got Bobby above 100 cal/kg (8-9 ounces less per day than what the doctor recommended) yet his weight and growth were fine. We believe that if we cut his feeds to 2 times a day plus the overnight feed there's a good chance he will have less come out through spit ups and venting and he'll feel better so we won't have to keep substituting Pedialyte for formula to keep his tummy under control. Our goal is to find the caloric intake that Bobby can comfortably manage and then see how the weight gain goes.
At Monday's appointment we also asked for another endoscopy to make sure everything is OK in Bobby's system. The doctor doesn't think it's necessary - largely because his growth is good. Yet last year, Bobby spent 2 months throwing up because of a bacterial infection called H.Pylori. It was detected in an endoscopy that was only done because he was losing weight. At some point, it seems to me that if Bobby is in so much discomfort from eating three ounces of formula in an hour, we should be able to have a doctor go take another look. Or at least do a biopsy to make sure he doesn't still have H.Pylori or some other bacterial issue that is oh so easy to pick up in the hospital.
So we keep slogging away. We have gotten so much wrong advice in Bobby's GI life that we don't know what to believe right now. I'm thankful that he is growing well and we aren't in a situation where this is becoming life or death. I suppose part of this is patience, waiting for Bobby to get stronger so he can digest more easily. Part of it is putting renewed emphasis on eating purees becaus he may never do great on an all formula diet. But mostly, I think we need to quit listening to all the outside noise and let Bobby's rum tum tum dictate the feeding schedule.
9/2/09
Estrella and Shafik
We had a little detour in Bubsy's road to health. Late last week he caught some sort of stomach bug. Post nissen surgery his stomach is not normal baby sized, so we were unable to keep him sufficiently hydrated. His blood sugar got too low, his dehydration took a toll on his heart and he started having some labored breathing. So, we ended up back in the hospital for 2 days.
Most importantly, Bobby is fine now. Maybe a little too fine as tonight, his first night home, he figured out how to pull on his g-tube cord so that the iv pole its attached to rolls across the floor. It's a good trick, a pretty smart trick I must say, but one we can definitely do without.
The hospital was interesting as always. Because he had had some vomiting and diarrhea he was put in isolation. At Children's isolation also means no roommate, which is a huge boon. It's rough to share a room at the hospital - first of all the rooms are tiny so mama ends up sleeping on a fold out chair jammed against Bobby's bed. A day or two of that kind of closeness is way too much. More important than that, who wants their sick baby in such close quarters with another sick baby? Bobby has gotten more viruses from the hospital than ailments our 11 hospital visits have cured. Lastly, a children's hospital is full of angry parents - parents who want their child discharged; parents who don't want to share a room; parents who don't believe the doctors are doing enough for their child; parents who are tired of dealing with residents and want to talk to a 'real' doctor. When I'm the angry parent, I don't really want a roommate listening in on my discussions about Bobby's care. When our roommate has an angry parent I balk at having to spend my day swimming in the negative energy. So, while I'm not happy Bubs had diarrhea, I will say that if he has to be hospitalized, I'd just as soon it be for something that lands him in isolation.
This hospitalization also marked Bobby's first ride in an ambulance. His labored breathing on Monday night was something new - I was used to his old huffing and puffing from congestive heart failure, but this was something scarier. He was breathing in loudly and forcing air out by puckering his mouth and blowing through his lips. At first I thought it was just a new oral activity for him, like raspberrying or fish face kisses. But as time wore on I became more and more worried. So I called an ambulance.
The paramedics showed up in about 3 minutes. Living next to a fire station is often a nuisance, with the loud sirens at all times of night. But living next to a fire station on Monday night was a blessing. They hooked up Bobby to a pulsometer to check his oxygen levels. Those were fine, but still I wanted him to go to the emergency room.
We ended up at Weiss Memorial hospital a few minutes from our house. It was our first visit to somewhere besides Children's. The care was good, although its much different to be in a hospital that's used to serving adults. The nurses didn't wear smocks with Sesame Street characters on them. They had to search for the right sized blood pressure cuffs. The only diaper they had was for a 30 pound baby. And, they had to search for someone to draw blood from Bobby.
Bobby is, as they say in the phlebotomy business, a 'tough stick'. I've watched a heart surgeon struggle to draw blood from him. Bobby's required an ultrasound for someone to find a vein in him. The angriest scar on his body is from an IV placement in his wrist that was so botched he required stitches.
At Children's, we only allow one phlebotomist to take Bobby's blood. Shafik has worked at Children's for 20 years and is unquestionably the best at what he does. He has arrived on the heels of the vascular access team, specialists in 'tough sticks' who often fail to get blood from Bubs. Shafik draws the blood in his first try. He's so skilled that Bobby doesn't always have time to cry. Shafik patiently searches for a vein, all the while comforting Bobby with his thick Arabic accent 'it's OK baby. Sorry baby. I'm almost done baby. It's OK baby. It's OK baby'. Without him, I'm afraid Bobby would look like a pin cushion now, so full of holes from failed sticks. To us, a good phlebotomist is as valuable as any member of the hospital staff. He has saved Bobby an unbelievable amount of suffering.
So at Weiss we were very concerned about Bobby's blood draw. If staff trained to work with children couldn't successfully get blood from Bobby, what could we expect of these folks? Sure enough, the first nurse came in, looked at his feet and his arms and then shook her head, telling our primary nurse to 'find Estrella'. Estrella was on triage duty that night and we waited a full hour and a half for her to have time to see us. Bobby's breathing had returned to normal and we considered signing ourselves out and taking Bobby to Children's, so convinced were we that the blood draw attempt would fail.
Finally, Estrella came into the room. She was an older woman, with gray streaks in her dark hair. She had glasses that sat low on her nose, as if she were more a librarian than a nurse. She studied Bobby's arms and feet for a long time, finally settling on his left foot. We held Bobby still as the needle went under his skin. I held my breath watching for blood to flow out. And it did.
"Thank God," Estrella said softly, repeating her praise just as Shafik repeats "It's OK baby. It's OK baby." For Estrella, Bobby actually fell asleep in the middle of the blood draw.
I thanked Estrella, telling her that she was only the second person to successfully draw blood from Bobby on the first try. "I prayed for it," she said.
She was so sincere. I was very touched. Obviously Estrella is very skilled at what she does. Her coworkers defer to her and she equaled the accomplishment of the very best phlebotomist we know. But for all her skill she doesn't forget the power of prayer. And in doing so she saved my little boy a lot of unhappiness and pain.
Most importantly, Bobby is fine now. Maybe a little too fine as tonight, his first night home, he figured out how to pull on his g-tube cord so that the iv pole its attached to rolls across the floor. It's a good trick, a pretty smart trick I must say, but one we can definitely do without.
The hospital was interesting as always. Because he had had some vomiting and diarrhea he was put in isolation. At Children's isolation also means no roommate, which is a huge boon. It's rough to share a room at the hospital - first of all the rooms are tiny so mama ends up sleeping on a fold out chair jammed against Bobby's bed. A day or two of that kind of closeness is way too much. More important than that, who wants their sick baby in such close quarters with another sick baby? Bobby has gotten more viruses from the hospital than ailments our 11 hospital visits have cured. Lastly, a children's hospital is full of angry parents - parents who want their child discharged; parents who don't want to share a room; parents who don't believe the doctors are doing enough for their child; parents who are tired of dealing with residents and want to talk to a 'real' doctor. When I'm the angry parent, I don't really want a roommate listening in on my discussions about Bobby's care. When our roommate has an angry parent I balk at having to spend my day swimming in the negative energy. So, while I'm not happy Bubs had diarrhea, I will say that if he has to be hospitalized, I'd just as soon it be for something that lands him in isolation.
This hospitalization also marked Bobby's first ride in an ambulance. His labored breathing on Monday night was something new - I was used to his old huffing and puffing from congestive heart failure, but this was something scarier. He was breathing in loudly and forcing air out by puckering his mouth and blowing through his lips. At first I thought it was just a new oral activity for him, like raspberrying or fish face kisses. But as time wore on I became more and more worried. So I called an ambulance.
The paramedics showed up in about 3 minutes. Living next to a fire station is often a nuisance, with the loud sirens at all times of night. But living next to a fire station on Monday night was a blessing. They hooked up Bobby to a pulsometer to check his oxygen levels. Those were fine, but still I wanted him to go to the emergency room.
We ended up at Weiss Memorial hospital a few minutes from our house. It was our first visit to somewhere besides Children's. The care was good, although its much different to be in a hospital that's used to serving adults. The nurses didn't wear smocks with Sesame Street characters on them. They had to search for the right sized blood pressure cuffs. The only diaper they had was for a 30 pound baby. And, they had to search for someone to draw blood from Bobby.
Bobby is, as they say in the phlebotomy business, a 'tough stick'. I've watched a heart surgeon struggle to draw blood from him. Bobby's required an ultrasound for someone to find a vein in him. The angriest scar on his body is from an IV placement in his wrist that was so botched he required stitches.
At Children's, we only allow one phlebotomist to take Bobby's blood. Shafik has worked at Children's for 20 years and is unquestionably the best at what he does. He has arrived on the heels of the vascular access team, specialists in 'tough sticks' who often fail to get blood from Bubs. Shafik draws the blood in his first try. He's so skilled that Bobby doesn't always have time to cry. Shafik patiently searches for a vein, all the while comforting Bobby with his thick Arabic accent 'it's OK baby. Sorry baby. I'm almost done baby. It's OK baby. It's OK baby'. Without him, I'm afraid Bobby would look like a pin cushion now, so full of holes from failed sticks. To us, a good phlebotomist is as valuable as any member of the hospital staff. He has saved Bobby an unbelievable amount of suffering.
So at Weiss we were very concerned about Bobby's blood draw. If staff trained to work with children couldn't successfully get blood from Bobby, what could we expect of these folks? Sure enough, the first nurse came in, looked at his feet and his arms and then shook her head, telling our primary nurse to 'find Estrella'. Estrella was on triage duty that night and we waited a full hour and a half for her to have time to see us. Bobby's breathing had returned to normal and we considered signing ourselves out and taking Bobby to Children's, so convinced were we that the blood draw attempt would fail.
Finally, Estrella came into the room. She was an older woman, with gray streaks in her dark hair. She had glasses that sat low on her nose, as if she were more a librarian than a nurse. She studied Bobby's arms and feet for a long time, finally settling on his left foot. We held Bobby still as the needle went under his skin. I held my breath watching for blood to flow out. And it did.
"Thank God," Estrella said softly, repeating her praise just as Shafik repeats "It's OK baby. It's OK baby." For Estrella, Bobby actually fell asleep in the middle of the blood draw.
I thanked Estrella, telling her that she was only the second person to successfully draw blood from Bobby on the first try. "I prayed for it," she said.
She was so sincere. I was very touched. Obviously Estrella is very skilled at what she does. Her coworkers defer to her and she equaled the accomplishment of the very best phlebotomist we know. But for all her skill she doesn't forget the power of prayer. And in doing so she saved my little boy a lot of unhappiness and pain.
9/1/09
8/18/09
8/5/09
Assessment Time
Its been a long couple of weeks here in Grunsted land. We've been going through Bobby's 1 year assessments (delayed because of all of his surgeries). The results have been disheartening. His Physical Therapy assessment showed him at the same age equivalency as his 6 month assessment. He came out as 4-5 months. To some extent, we just flat our reject that score. He is much, much stronger than he was 6 months ago and his general health and fitness aren't even comparable to winter time. But he has yet to achieve any of the major milestones - he can't roll over tummy to back by himself, he can't sit, he can't crawl, he can't walk. Etc.
On the speech/feeding side, he has done better in terms of oral motor skills. He can babble quite a few sounds now. He keeps his tongue in his mouth more of the time. But he can't eat. Not only can't he eat, but he is doing worse than he did 10 months ago when he started eating baby food. Then he could eat 5-6 bites of puree. Now we struggle to get one bite into him. He has choked several times recently when he tried to swallow - something he's never done before. We hope that things will get better once his g-tube feedings are better spaced and he has a chance to feel hungry (right now, he's eating 14 hours a day) but I'm starting to wonder if he will ever be able to eat on his own. We're a long, long way from giving up on that, but the reality is some people do end up spending their lives on a feeding tube.
He hasn't had his occupational therapy assessment yet (tomorrow) but his developmental assessment did have some encouraging signs. Bobby's cognitive development has been better now that he feels better. He knows his name now, imitates our actions, engages in interactive play, and is starting to really study the world around him to try to figure out how things work.
So we tell ourselves it could be much worse. And it could. Now that he's doing so much better medically its easy to forget how sick he was a year ago. And its easy to start taking that for granted. But, now that we're not immersed in heart problems and GI surgeries we're really starting to feel the impact of the developmental disability side of Down Syndrome. And its horrible to want so much for your baby to be able to roll over and yet not be able to teach him how to after months of trying. And how do you teach your baby to swallow without choking?
When I hold Bobby in my arms and he reaches up to give me a hug and kiss I don't focus on these details - I just see the beautiful person he is. But at the same time I'm struggling now to find - in the pressure not to dwell on the negative and the imperative to count our blessing - the time to grieve for what's been lost. I hear a lot (and heck, have repeated myself a thousand times) that all children have limitations, that Bobby will eventually reach all these milestones, but the reality is that Bobby's climb is much steeper than that of other children and that he may not learn how to do all the things that most of us take for granted. I hope for the best. We'll give him the help he needs to reach his full potential. But this is breaking my heart.
On the speech/feeding side, he has done better in terms of oral motor skills. He can babble quite a few sounds now. He keeps his tongue in his mouth more of the time. But he can't eat. Not only can't he eat, but he is doing worse than he did 10 months ago when he started eating baby food. Then he could eat 5-6 bites of puree. Now we struggle to get one bite into him. He has choked several times recently when he tried to swallow - something he's never done before. We hope that things will get better once his g-tube feedings are better spaced and he has a chance to feel hungry (right now, he's eating 14 hours a day) but I'm starting to wonder if he will ever be able to eat on his own. We're a long, long way from giving up on that, but the reality is some people do end up spending their lives on a feeding tube.
He hasn't had his occupational therapy assessment yet (tomorrow) but his developmental assessment did have some encouraging signs. Bobby's cognitive development has been better now that he feels better. He knows his name now, imitates our actions, engages in interactive play, and is starting to really study the world around him to try to figure out how things work.
So we tell ourselves it could be much worse. And it could. Now that he's doing so much better medically its easy to forget how sick he was a year ago. And its easy to start taking that for granted. But, now that we're not immersed in heart problems and GI surgeries we're really starting to feel the impact of the developmental disability side of Down Syndrome. And its horrible to want so much for your baby to be able to roll over and yet not be able to teach him how to after months of trying. And how do you teach your baby to swallow without choking?
When I hold Bobby in my arms and he reaches up to give me a hug and kiss I don't focus on these details - I just see the beautiful person he is. But at the same time I'm struggling now to find - in the pressure not to dwell on the negative and the imperative to count our blessing - the time to grieve for what's been lost. I hear a lot (and heck, have repeated myself a thousand times) that all children have limitations, that Bobby will eventually reach all these milestones, but the reality is that Bobby's climb is much steeper than that of other children and that he may not learn how to do all the things that most of us take for granted. I hope for the best. We'll give him the help he needs to reach his full potential. But this is breaking my heart.
7/27/09
7/10/09
Feeding Frenzy
This week in Bubsy land has found us focusing on his feeding schedule. We went to the ER Monday night because his wretching had gotten so bad that it was impacting his breathing. X rays confirmed that his g-tube and nissen were still in place. They admitted us with promises of an upper GI on Tuesday morning. But, when Tuesday came around they did not do anything further to help him. Instead they offered to keep him and 'watch' his feed for 36 hours. Now, 'watch' on one of the main floors of the hospital is a tricky concept. The nurses have a full load of patients in different rooms and are required to check on Bubs once every four hours. The residents who we might page are of course quite busy and take a long time to come when paged. So, 'watch' means that Mamas A and V sit on their butts for 36 hours and watch Bubsy and listen to the cries of the child in the next bed and wait for Bobby to run a temperature because of the infection he always gets in the hospital. So if he did wretch the doctors would have to take our word for it. Which is exactly what we wished they would do based on us having 'watched' him wretch for the past several weeks. (I don't know what sound a tree makes in an empty forest, but apparently a wretch is not heard unless its viewed by at least a resident). It took me about 7 hours of arguing but Bobby was eventually discharged for us to 'watch' from our own house. They suggested we change his feed and sent a nutritionist to give us a recommendation. The nutritionist asked me what I thought would be a good approach and wrote that down on her sheet.
So we got nowhere except that Bubs did get an IV and a break from eating for about 12hours. And we've started him on a gentler schedule. So far it looks promising although it will take another week or so for us to get back to any kind of maintainable schedule. In the meantime, Bobby had a cold - predating the hospital, we think, so its been a quiet week with lots of snuggling.
He is learning to push himself on a four wheeled scooter. He has started saying 'kay kay kay kay'. And has been the case for several months now, he just feels a ton stronger. This weekend we are starting our "Merry Music Maker" class and are hopefully going to a folk festival where they have an instrument petting zoo. He continues to refuse to roll over and we are beginning to think the boy may walk before he regularly rolls over tummy to back. That must be mohawk thinking.
So we got nowhere except that Bubs did get an IV and a break from eating for about 12hours. And we've started him on a gentler schedule. So far it looks promising although it will take another week or so for us to get back to any kind of maintainable schedule. In the meantime, Bobby had a cold - predating the hospital, we think, so its been a quiet week with lots of snuggling.
He is learning to push himself on a four wheeled scooter. He has started saying 'kay kay kay kay'. And has been the case for several months now, he just feels a ton stronger. This weekend we are starting our "Merry Music Maker" class and are hopefully going to a folk festival where they have an instrument petting zoo. He continues to refuse to roll over and we are beginning to think the boy may walk before he regularly rolls over tummy to back. That must be mohawk thinking.
7/7/09
The GI Saga Continues...
Bobby was admitted to CMH again tonight... having issues with discomfort with his feeds and weird breathing (sleep apnea?). They've scheduled an upper GI for tomorrow. We think he's somehow undone his Nissen surgery, which is supposed to help with his acid reflux. Let's hope they uncover something to explain the distress he's been in for the past few days!
7/4/09
Summertime in the City
Bobby is doing great these days. The g-tube/nissen surgery have made a huge difference in terms of how well he feels. Now that he's keeping his feeds down he's had a nice growth spurt and, of course, feels much better without throwing up 10 times a day.
The feeding schedule is a little hectic right now. His stomach shrank when he was on continuous feeds so we need to work our way back up to being able to handle meals. He does a continuous feed for 12 hours at night and then in the day eats 3 ounces over an hour with two hour breaks. So we're tied to the feeding tube a lot of the time.
That hasn't slowed him down though. He's getting stronger every minute. He's very close to being able to sit up all by himself and is stable enough that we can do things like push him around in a little tricycle and put him on his wooden horse for a rollicking good time. We go to the park to swing and when its hot he plays in his baby pool. It's a blast.
We've had a couple of problems - last weekend at about 1 am Bobby was crying and I was trying to get access to his tube so that I could vent it (remove the air from his tummy). In my haste I pulled out the tube. We went to the ER and they replaced it, poorly. So, we were back again in about 36 hours when the tube fell out of its own accord. Yuck. Valerie and I estimated the total ER visits for Bobby's first 15 months at somewhere around, well, 10 or 15. I've included a couple of videos below to show how Valerie and I have developed a whole ER variety show to keep Bobby entertained.
Day care is pretty much set. He did a trial run on Wednesday and seemed to do pretty well. He didn't freak out when Luke, a cute little boy in his class, stole his toys, but he did push him away a little bit, which I think is a good sign. His teacher seems excited to have Bobby in class.
We are going to have to find a new physical and speech/feeding therapist for Bubs. The daycare is not within their coverage area. We're disappointed because they have been great with Bobby, but we need some sanity in our lives and trying to juggle day care 30 minutes from our house and therapy visits at the house is just too much.
July brings with it a fun trip to Kansas City to see family and friends. We are trying to get out of the house as much as possible - we're so stir crazy from the last year of not being able to leave. Today we are going to go see Snoopy The Musical. I really hope Bobby likes it because I love children's shows and its something I would love to be able to do with Bobby for years to come.
Next Saturday he and I are going to start a music class. In August Mama V and Bobby will be attending Aqua Babies swim classes. He takes another music class with Nanny Beth on Mondays. He's a very busy boy - and how wonderful that his busy-ness does not include cardiology tests or GI hospitalizations. He's thriving and its just a miracle to watch.
The feeding schedule is a little hectic right now. His stomach shrank when he was on continuous feeds so we need to work our way back up to being able to handle meals. He does a continuous feed for 12 hours at night and then in the day eats 3 ounces over an hour with two hour breaks. So we're tied to the feeding tube a lot of the time.
That hasn't slowed him down though. He's getting stronger every minute. He's very close to being able to sit up all by himself and is stable enough that we can do things like push him around in a little tricycle and put him on his wooden horse for a rollicking good time. We go to the park to swing and when its hot he plays in his baby pool. It's a blast.
We've had a couple of problems - last weekend at about 1 am Bobby was crying and I was trying to get access to his tube so that I could vent it (remove the air from his tummy). In my haste I pulled out the tube. We went to the ER and they replaced it, poorly. So, we were back again in about 36 hours when the tube fell out of its own accord. Yuck. Valerie and I estimated the total ER visits for Bobby's first 15 months at somewhere around, well, 10 or 15. I've included a couple of videos below to show how Valerie and I have developed a whole ER variety show to keep Bobby entertained.
Day care is pretty much set. He did a trial run on Wednesday and seemed to do pretty well. He didn't freak out when Luke, a cute little boy in his class, stole his toys, but he did push him away a little bit, which I think is a good sign. His teacher seems excited to have Bobby in class.
We are going to have to find a new physical and speech/feeding therapist for Bubs. The daycare is not within their coverage area. We're disappointed because they have been great with Bobby, but we need some sanity in our lives and trying to juggle day care 30 minutes from our house and therapy visits at the house is just too much.
July brings with it a fun trip to Kansas City to see family and friends. We are trying to get out of the house as much as possible - we're so stir crazy from the last year of not being able to leave. Today we are going to go see Snoopy The Musical. I really hope Bobby likes it because I love children's shows and its something I would love to be able to do with Bobby for years to come.
Next Saturday he and I are going to start a music class. In August Mama V and Bobby will be attending Aqua Babies swim classes. He takes another music class with Nanny Beth on Mondays. He's a very busy boy - and how wonderful that his busy-ness does not include cardiology tests or GI hospitalizations. He's thriving and its just a miracle to watch.
7/3/09
6/13/09
6/7/09
Bubby Land
All is well here in Bubbyland. The first week after surgery was a bit tough - the feeding tube site was sore and he was in pain unless he laid in just the right position. We spent a lot of time cuddling with him, which is not bad duty at all.
This week he's returning to his familiar self. He's still only able to play on his tummy for short times, but he's able to play on his side and to practice sitting up.
His tummy problems have gotten much better. He wretches occasionally, but for the most part he is able to take in his calories with little issue. He is still on a continuous feed - he is hooked to the feeding pump 18 hours and get a couple of three hour breaks. Its wonderful to be able to take him out or play with him with no tubes attached. Its more wonderful not to have to deal with a tube hanging out of his nose all the time. Bobby concurs on both counts.
Right now, Bubs is on the floor rattling his maraca and making raspberries. He is becoming quite a babbling brook. He can make several consonants and even engages in the following conversation.
We say "ma ma ma ma ma'.
Bubby says 'da da da da da'
We say "ma ma ma ma ma ma'.
Bubby smiles and says 'da da ba ba ta ta ta'.
We go to the GI doctor tomorrow and will soon start moving away from continuous feeds and towards meals. That will be huge. It will be particularly important because WE FOUND DAYCARE FOR BOBBY.
As our long term readers will remember, we have had horrendous problems finding daycare for Bobby. Providers were scared off by the feeding tubes. This latest go around we had one daycare tell us, upon learning that Bobby had Ds, that they were full and we could not even apply for the waiting list. Five minutes later, Valerie called back pretending to be someone else and was told that the center had a very short waiting list and that we could come for a tour the following week. Of course all this is illegal and made worse in my mind by the fact that the center is funded by Chicago Public Schools. However, when I complained to CPS, they seemed relatively unconcerned that the center director had told Valerie that 'she wasn't sure she even needed to follow the ADA'. We haven't decided how to deal with them.
But, the good news is we have found a lovely daycare center in Evanston. Its on a hospital campus, which let's face it, is not a bad idea for the Bubs. The center director has a son with developmental disabilities and the center has another child with Down Syndrome. Bobby will start in the room for 7-12 month olds which is a perfect fit for him developmentally. He starts in September.
In the meantime, we are planning a lovely summer. We are going to a children's music concert next Saturday. We have gotten doctor's permission for Bobby to take swimming lessons and also bought him a kiddie pool for our yard. Our major developmental goals are to get Bobby sitting by end of August as well as eating a couple of meals a day of pureed food. His current cognitive goal is to learn how to hit things with a mallet. I suspect that's one of those things we'll regret him knowing at some point. And we are generally just going to enjoy being a family. Outside of the hospital.
This week he's returning to his familiar self. He's still only able to play on his tummy for short times, but he's able to play on his side and to practice sitting up.
His tummy problems have gotten much better. He wretches occasionally, but for the most part he is able to take in his calories with little issue. He is still on a continuous feed - he is hooked to the feeding pump 18 hours and get a couple of three hour breaks. Its wonderful to be able to take him out or play with him with no tubes attached. Its more wonderful not to have to deal with a tube hanging out of his nose all the time. Bobby concurs on both counts.
Right now, Bubs is on the floor rattling his maraca and making raspberries. He is becoming quite a babbling brook. He can make several consonants and even engages in the following conversation.
We say "ma ma ma ma ma'.
Bubby says 'da da da da da'
We say "ma ma ma ma ma ma'.
Bubby smiles and says 'da da ba ba ta ta ta'.
We go to the GI doctor tomorrow and will soon start moving away from continuous feeds and towards meals. That will be huge. It will be particularly important because WE FOUND DAYCARE FOR BOBBY.
As our long term readers will remember, we have had horrendous problems finding daycare for Bobby. Providers were scared off by the feeding tubes. This latest go around we had one daycare tell us, upon learning that Bobby had Ds, that they were full and we could not even apply for the waiting list. Five minutes later, Valerie called back pretending to be someone else and was told that the center had a very short waiting list and that we could come for a tour the following week. Of course all this is illegal and made worse in my mind by the fact that the center is funded by Chicago Public Schools. However, when I complained to CPS, they seemed relatively unconcerned that the center director had told Valerie that 'she wasn't sure she even needed to follow the ADA'. We haven't decided how to deal with them.
But, the good news is we have found a lovely daycare center in Evanston. Its on a hospital campus, which let's face it, is not a bad idea for the Bubs. The center director has a son with developmental disabilities and the center has another child with Down Syndrome. Bobby will start in the room for 7-12 month olds which is a perfect fit for him developmentally. He starts in September.
In the meantime, we are planning a lovely summer. We are going to a children's music concert next Saturday. We have gotten doctor's permission for Bobby to take swimming lessons and also bought him a kiddie pool for our yard. Our major developmental goals are to get Bobby sitting by end of August as well as eating a couple of meals a day of pureed food. His current cognitive goal is to learn how to hit things with a mallet. I suspect that's one of those things we'll regret him knowing at some point. And we are generally just going to enjoy being a family. Outside of the hospital.
5/25/09
Home!
Bubsy came home today. He's exhausted. We're exhausted. But he's doing great. A proper update will come tomorrow.
5/24/09
More News from the Bubsy Bedside
Bubsy and Mama V had a rough night, too. He kept wretching, however, he was able to get up to 42 ml/hr of feeds with no morphine. Progress! Also, the surgery physicians just 'realized' that perhaps Bobby's g-tube needs venting to help his reflux. Plus, Miralax was also ordered, so hopefully Bobby will find tummy/GI relief soon.
They are talking discharge tomorrow (Memorial Day Monday), which would be delightful. We know from experience that Bobby heals more quickly at home.
It's Mama A on duty tonight. Hopefully this is the last of the hospital admissions for a (long) while... Amen!
They are talking discharge tomorrow (Memorial Day Monday), which would be delightful. We know from experience that Bobby heals more quickly at home.
It's Mama A on duty tonight. Hopefully this is the last of the hospital admissions for a (long) while... Amen!
5/23/09
News from the Bubsy Bedside
Bubsy and Mama A had a rough night. He kept wretching (more commonly known by college students as dry heaving). I don't think he slept more than 45 minutes at a stretch, meaning Mama A slept not at all.
But that's all last night. Today, he got off of his oxygen and they pulled his nasal tube. Now his cheeks are free. I learned how to hook up the g-tube and its as easy as promised. His wretching is now much better because that big old nasal tube is out of his throat.
He had a bath. He's dressed. He's about to start feeding through the g-tube. He's playing with his toys a bit. We can cuddle and he's allowed to go for walks around the hospital. His face is still a bit swollen but overall he looks much more like himself, except that he doesn't have tape on his face!
So Bubsy is taking a nap. Mamas are going to eat some lunch and then I'm taking a nap to rest up for our big afternoon walk. The doctors say he's doing as well as they could hope - something we don't often hear during hospital stays. Go Bobby Go!
But that's all last night. Today, he got off of his oxygen and they pulled his nasal tube. Now his cheeks are free. I learned how to hook up the g-tube and its as easy as promised. His wretching is now much better because that big old nasal tube is out of his throat.
He had a bath. He's dressed. He's about to start feeding through the g-tube. He's playing with his toys a bit. We can cuddle and he's allowed to go for walks around the hospital. His face is still a bit swollen but overall he looks much more like himself, except that he doesn't have tape on his face!
So Bubsy is taking a nap. Mamas are going to eat some lunch and then I'm taking a nap to rest up for our big afternoon walk. The doctors say he's doing as well as they could hope - something we don't often hear during hospital stays. Go Bobby Go!
5/22/09
One day done
It's been a long but largely successful day for Bobby. This morning we had a bit of excitement as he developed something akin to a rash. His face and shoulders turned bright red, although he didn't have any hives. That went away with cold compresses but then came back this evening, albeit not as bad. The doctors think its a reaction to morphine.
Speaking of which, Bobby has been off of the morphine since 11:00 and it looks promising for us to stay off. He's on Tylenol every 6 hours and that, along with lots of gentle care, seem to do the trick. He hasn't really been all that awake today - he's been pretty out of it, which is just as well.
The father of our little roommate came this afternoon. I'm happy to know that there is a dad. And a very loving dad at that. There was an unfortunate incident involving booger removal and a screaming little guy, but that particular chore is very controversial with Bobby as well.
So we hope for good sleep tonight and I expect a much more alert Bobby in the morning. We'll start his feeds midday. He will begin with 5 ml dripped over an hour. He moves up 5 ml every 4 or so hours. That means he should be on full feeds sometime Sunday.
Speaking of which, Bobby has been off of the morphine since 11:00 and it looks promising for us to stay off. He's on Tylenol every 6 hours and that, along with lots of gentle care, seem to do the trick. He hasn't really been all that awake today - he's been pretty out of it, which is just as well.
The father of our little roommate came this afternoon. I'm happy to know that there is a dad. And a very loving dad at that. There was an unfortunate incident involving booger removal and a screaming little guy, but that particular chore is very controversial with Bobby as well.
So we hope for good sleep tonight and I expect a much more alert Bobby in the morning. We'll start his feeds midday. He will begin with 5 ml dripped over an hour. He moves up 5 ml every 4 or so hours. That means he should be on full feeds sometime Sunday.
Quiet Friday (Hopefully)
Bobby had a rough time last night. He was on morphine from about 6:30 on, but his doses came every 3 hours and the effect only lasted 2. Although, genius mom that I am, at 2 this morning I finally decided to hold him, cords and leads be darned, and that calmed him immediately. I should know better than to let all the attachments scare me off of holding him.
So now he's sleeping comfortably. We're going to try to keep him on Tylenol instead of morphine today. I'm hoping today will be about sleeping and cuddling. We're just waiting for his tube to heal a bit - we will start feeding him tomorrow.
We've been very lucky staff wise during this stay. Pretty much everyone we've come in contact with has been very nice and very good at what they do. Being on 5W is like a reunion for us - staff keep stopping by to say hello.
We have a very nice roommate. He's a little guy, maybe a year or so older than Bobby. He either doesn't have parents or he doesn't have parents who can be here so the nurses take care of him. He spends his awake time at the nurse's station being doted on. Right now, he's gone to his play group.
So now he's sleeping comfortably. We're going to try to keep him on Tylenol instead of morphine today. I'm hoping today will be about sleeping and cuddling. We're just waiting for his tube to heal a bit - we will start feeding him tomorrow.
We've been very lucky staff wise during this stay. Pretty much everyone we've come in contact with has been very nice and very good at what they do. Being on 5W is like a reunion for us - staff keep stopping by to say hello.
We have a very nice roommate. He's a little guy, maybe a year or so older than Bobby. He either doesn't have parents or he doesn't have parents who can be here so the nurses take care of him. He spends his awake time at the nurse's station being doted on. Right now, he's gone to his play group.
5/21/09
Morphine Haze (7:53pm)
Bobby did great today. His extubation went well so we are now on a regular floor, not in the PICU. He had a rough time transitioning from the recovery room to his permanent bed. His stomach is sore so he wretched which made his stomach more sore. He turned a really bright red. It was a little scary. But, one dose of morphine set him right. He's now sound asleep and the goal is to keep him comfortable through the night.
Tomorrow will be a day of rest while the g-tube heals. Hopefully his pain will be better in the a.m. At the least his doctor seems to be of the mind to dope him up, which is good provided we don't end up on methadone like last time.
Tomorrow will be a day of rest while the g-tube heals. Hopefully his pain will be better in the a.m. At the least his doctor seems to be of the mind to dope him up, which is good provided we don't end up on methadone like last time.
More good news (5:15pm)
We just spoke with the audiologist and ophthalmologist. Bobby's hearing and his eyesight are fine. He has congenital nystagmus in his eyes which long term will require glasses, but for now his vision is good.
We're just waiting to hear about the extubation.
We're just waiting to hear about the extubation.
Round 1 complete! (4:05pm)
Bobby's surgeon just stopped by - his Nissen and G-tube surgery went very well. They were able to do the whole procedure laproscopically which will make the recovery time easier. Now we hang out for 48 hours waiting for the g-tube site to heal. We'll start feeding Bubs on Saturday and will likely go home Monday or Tuesday once he's back on regular feeds.
Now we are waiting while he gets his hearing test and eye exam. Its much easier now that he's closed up. The big safety issue now is when he gets extubated. If that goes well he'll be admitted to a regular floor. If not, we'll be in the PICU for a day or two.
Now we are waiting while he gets his hearing test and eye exam. Its much easier now that he's closed up. The big safety issue now is when he gets extubated. If that goes well he'll be admitted to a regular floor. If not, we'll be in the PICU for a day or two.
Update (1:19pm)
We just got an update from the OR.
They had a harder than expected time in putting in an IV. We knew that would happen - it always does.
So far they've started the nissen. They are trying to perform the surgery laproscopically and so far so good.
Most important, Bobby has been stable thus far.
They had a harder than expected time in putting in an IV. We knew that would happen - it always does.
So far they've started the nissen. They are trying to perform the surgery laproscopically and so far so good.
Most important, Bobby has been stable thus far.
Surgery Day (11:38am)
Valerie and I are sitting in the surgery waiting room, again. This whole process is way too familiar.
Today Bobby's getting a g-tube, a nissen fundoplication, a sedated hearing test (ABR) and an eye exam. The whole thing will take the better part of the afternoon.
We expect an update in about an hour once the anasthesia is done and the surgery starts.
Bobby had fun playing this morning - he spent a long time playing in his jumperoo - he's figured out how to pivot so he can go in the whole circle. It appears to be immensely enjoyable. Then, he had a nice nap in Mama Valerie's arms while we waited for the pre-op procedures.
I feel so bad that he keeps having to go through this. I'm at least glad we're getting 4 procedures done at the same time today.
More later...
Today Bobby's getting a g-tube, a nissen fundoplication, a sedated hearing test (ABR) and an eye exam. The whole thing will take the better part of the afternoon.
We expect an update in about an hour once the anasthesia is done and the surgery starts.
Bobby had fun playing this morning - he spent a long time playing in his jumperoo - he's figured out how to pivot so he can go in the whole circle. It appears to be immensely enjoyable. Then, he had a nice nap in Mama Valerie's arms while we waited for the pre-op procedures.
I feel so bad that he keeps having to go through this. I'm at least glad we're getting 4 procedures done at the same time today.
More later...
5/17/09
Another Round
We had big plans today - go see nana and then up to Lambs Farm for lunch and petting zoo fun. But Bobby's feeding tube kept coming unhooked - this after he was soaked twice yesterday from it leaking. So, we spent the better part of the day in the emergency room getting his feeding tube replaced.
Hopefully, this is the last time. Bobby is getting a g-tube on Thursday May 21st - that's a feeding tube that goes directly into his stomach. He will also have a nissen fundoplication - an operation where his esophagus is tightened at the point where it connects to the stomach. This will help his reflux.
Its a pretty big surgery, but truth is, after heart surgery nothing seems that major. He'll be in the hospital 3-5 days but beyond that we don't know about recovery time. We know he won't have a feeding tube in his nose anymore and he should be able to get off of continuous feeds in a few weeks. That will free the boy up for all the new and fun things he's learning.
His latest? He's started reaching for us when he wants to be held. Its a great manuever for him because we can't resist it. Last Friday he got an early end to his speech therapy because he reached for Nanny Beth for the first time. That boy is going to be trouble :)
Hopefully, this is the last time. Bobby is getting a g-tube on Thursday May 21st - that's a feeding tube that goes directly into his stomach. He will also have a nissen fundoplication - an operation where his esophagus is tightened at the point where it connects to the stomach. This will help his reflux.
Its a pretty big surgery, but truth is, after heart surgery nothing seems that major. He'll be in the hospital 3-5 days but beyond that we don't know about recovery time. We know he won't have a feeding tube in his nose anymore and he should be able to get off of continuous feeds in a few weeks. That will free the boy up for all the new and fun things he's learning.
His latest? He's started reaching for us when he wants to be held. Its a great manuever for him because we can't resist it. Last Friday he got an early end to his speech therapy because he reached for Nanny Beth for the first time. That boy is going to be trouble :)
5/14/09
5/12/09
Movin' and a Shakin'
This is a very fun time to be part of Bubsy's life. He is getting stronger and stronger every day. He's rolling back to tummy now and almost has figured out tummy to back - he just needs to tuck his arm when he rolls. He's babbling more and more now - he's got down the 'ba' and the 'da' and has been known to surprise us with a 'ta' and a 'la'. I begged for 'ma' on Mother's Day, but no such luck :)
I think we're making real progress towards sitting up. He can sit in his booster chair now for a very long time - it provides some support because the tray and the back keep him from falling, but he does 75% of the work of sitting by himself. As he gets stronger he starts to play with his old toys in new ways - the cause and effect toys that he used to just push buttons on he now picks up and turns so he can examine all facets of the toy (for Bobby, examine = bite on and lick). He's even started putting some weight on his feet.
He seems very happy. He's smiling much more and we can get some giggles out of him. He's taking music class with his nanny Beth again and loves that. This time around he's even interacting with the other babies. He is really starting to engage in play now - the little boy who would lay on the floor quietly for an hour is no longer. He's been replaced by the little boy who lets us hear it when he gets bored.
So, things are good in Bobby land. The g-tube surgery will be soon - probably next week or the week after. First we have to get rid of a couple of infections - he has an abcess from his heart surgery suture and ear infections in both ears. Beth is picking up antibiotics for both as I write this. We cannot wait to be rid of the nj tube - we've been to the emergency room 4 times to have it replaced, each time taking 6 or so hours. The week of the swine flu outbreak we had to go twice - that left plenty of room for worry. It will be so nice to be off of continuous feeds so he can play without worrying about tubes.
I think we're making real progress towards sitting up. He can sit in his booster chair now for a very long time - it provides some support because the tray and the back keep him from falling, but he does 75% of the work of sitting by himself. As he gets stronger he starts to play with his old toys in new ways - the cause and effect toys that he used to just push buttons on he now picks up and turns so he can examine all facets of the toy (for Bobby, examine = bite on and lick). He's even started putting some weight on his feet.
He seems very happy. He's smiling much more and we can get some giggles out of him. He's taking music class with his nanny Beth again and loves that. This time around he's even interacting with the other babies. He is really starting to engage in play now - the little boy who would lay on the floor quietly for an hour is no longer. He's been replaced by the little boy who lets us hear it when he gets bored.
So, things are good in Bobby land. The g-tube surgery will be soon - probably next week or the week after. First we have to get rid of a couple of infections - he has an abcess from his heart surgery suture and ear infections in both ears. Beth is picking up antibiotics for both as I write this. We cannot wait to be rid of the nj tube - we've been to the emergency room 4 times to have it replaced, each time taking 6 or so hours. The week of the swine flu outbreak we had to go twice - that left plenty of room for worry. It will be so nice to be off of continuous feeds so he can play without worrying about tubes.
4/28/09
Taking Off
Bobby is going through one of those really fun phases where it seems he's doing something new every day. The biggest news is that he's started learning his consonants. He began with a 'ba' that now gets turned into 'da da' and some other unidentified noises. But its a huge breakthrough. We've spent months repeating the basic sounds to him (ba,ma,da,ka) and now he's gotten in. We're all very proud.
He's gotten much stronger since surgery. He's now able to lay on his tummy, put his weight on his forearms and play a little bit. He got a jumperoo for his birthday and he's done really with that - he is getting better at putting weight on his feet and is starting to strengthen his trunk when he's sitting up. He's learning to hold his arms in the air and make controlled movements. He's started showing some understanding of object permanence. He can bang two blocks together. These are all huge.
One of the best things about watching a boy like Bobby grow up is that we notice all of the little milestones. I don't think most baby books have a spot to indicate when a child moves from using a primitive grasp to a Palmer grasp. But we noticed when Bobby made that move. Banging two blocks together isn't just a child's game - it takes good motor skills and coordination. We are practicing rolling over, tummy to back, back to tummy. It takes a lot of practice and a lot of coordinated movements. And it will be a huge moment for our entire family when he can do it alone.
Otherwise, we've had many doctor appointments. Bobby will get a g-tube and a nissen fundoplication sometime in the next few weeks. The g-tube is a feeding tube that goes directly into the stomach. It will get all of the tubes out of his nose while he's learning to eat by himself. The nissen is a procedure to tighten the sphincter at the top of the stomach so that he won't reflux. This will allow us to eventually take him off continuous feeds and have regular meal times again. It will also keep his lungs healthier because he won't be aspirating.
Bobby has an echo later this week to see how his heart is doing and to see if his blood clot is gone. If it is, he will be cleared for surgery. If its not, we'll have to work with the doctors on next steps. Its possible but not ideal to have the surgery while he's still on blood thinners.
We had a swallow study. This is an xray test where they take a video of what happens in Bobby's mouth and throat when he eats. They confirmed that its safe for him to eat purees - he has enough control that the food is not going down the wrong way. Liquids are another story for now - there is some risk of aspiration so we will use thickener and proceed very slowly.
He missed his hearing test because of a ear infection. We will reschedule as soon as we get the all clear from the ENT.
In the meantime, we're off to the eye doctor today. Bobby needs surgery to correct his crossed eye and we're hoping to schedule that as part of the nissen/gtube.
Wow! And this is what we go through when Bobby is on the upswing.
He's gotten much stronger since surgery. He's now able to lay on his tummy, put his weight on his forearms and play a little bit. He got a jumperoo for his birthday and he's done really with that - he is getting better at putting weight on his feet and is starting to strengthen his trunk when he's sitting up. He's learning to hold his arms in the air and make controlled movements. He's started showing some understanding of object permanence. He can bang two blocks together. These are all huge.
One of the best things about watching a boy like Bobby grow up is that we notice all of the little milestones. I don't think most baby books have a spot to indicate when a child moves from using a primitive grasp to a Palmer grasp. But we noticed when Bobby made that move. Banging two blocks together isn't just a child's game - it takes good motor skills and coordination. We are practicing rolling over, tummy to back, back to tummy. It takes a lot of practice and a lot of coordinated movements. And it will be a huge moment for our entire family when he can do it alone.
Otherwise, we've had many doctor appointments. Bobby will get a g-tube and a nissen fundoplication sometime in the next few weeks. The g-tube is a feeding tube that goes directly into the stomach. It will get all of the tubes out of his nose while he's learning to eat by himself. The nissen is a procedure to tighten the sphincter at the top of the stomach so that he won't reflux. This will allow us to eventually take him off continuous feeds and have regular meal times again. It will also keep his lungs healthier because he won't be aspirating.
Bobby has an echo later this week to see how his heart is doing and to see if his blood clot is gone. If it is, he will be cleared for surgery. If its not, we'll have to work with the doctors on next steps. Its possible but not ideal to have the surgery while he's still on blood thinners.
We had a swallow study. This is an xray test where they take a video of what happens in Bobby's mouth and throat when he eats. They confirmed that its safe for him to eat purees - he has enough control that the food is not going down the wrong way. Liquids are another story for now - there is some risk of aspiration so we will use thickener and proceed very slowly.
He missed his hearing test because of a ear infection. We will reschedule as soon as we get the all clear from the ENT.
In the meantime, we're off to the eye doctor today. Bobby needs surgery to correct his crossed eye and we're hoping to schedule that as part of the nissen/gtube.
Wow! And this is what we go through when Bobby is on the upswing.
4/12/09
Sick Little Bunny
Unfortunately, our Easter plans for the weekend have not come true as Bobby has been sick. We think its a cold/upset tummy/teething kind of thing. He's been very congested and when he gets congested he tends to reflux more and when he refluxes all hell breaks loose. After a very long night he's been able to get some sleep today and even dress up in his easter suit for a few pictures. He has been on Pedialyte all day so the real test will be tonight when he gets some formula.
Still, things are looking up. He had a great week in therapy. He had some sort of therapy four days last week and he exceeded everyone's expectations in terms of how long he was able to work. He seems happy to be active again. I think he really likes our new emphasis on talking games - once that boy figures out how to make a few consonants I expect our days of quiet Sunday afternoons are forever gone.
Valerie and I agree that we have times with Bubby now where he is happier and feels better than he ever has in his life. He is smiling more every day and is really becoming vocal and social. He's such a sweet boy. One of our favorite new things that he does is lightly scratch our arms or under our chin when we hold him. Adorable.
He had a pediatrician check up and we found out that he's gained half a pound since being home. He's on fewer than the recommended calories so the good weight gain is great news. He's also, for the first time in his life, on the same 50% Down Syndrome growth curve for height and weight. Up until now he's always been on the 25% curve for length. This is another great sign that he's getting the nutrition he needs. Given our troubles with reflux and feeding tubes its amazing that he's done so well. But, then, if I know about anything, I know how to pack some pounds on.
The next 2 weeks are crazy busy. Tuesday we're going to see a pediatrician who specializes in Oriental Medicine. We're hoping he can help with some of the reflux and congestion issues. Wednesday he has a swallow study where he will be xrayed as he eats a few bites. This will help our speech therapist determine if he is in danger of aspirating while he eats. Next week is our consult for the g-tube, his cardiology appointment, and his sedated hearing test. Plus, he has to get blood drawn once a week because he's still on Coumadine for his blood clot. Thank goodness he has such a great nanny to help with all of this.
Still, things are looking up. He had a great week in therapy. He had some sort of therapy four days last week and he exceeded everyone's expectations in terms of how long he was able to work. He seems happy to be active again. I think he really likes our new emphasis on talking games - once that boy figures out how to make a few consonants I expect our days of quiet Sunday afternoons are forever gone.
Valerie and I agree that we have times with Bubby now where he is happier and feels better than he ever has in his life. He is smiling more every day and is really becoming vocal and social. He's such a sweet boy. One of our favorite new things that he does is lightly scratch our arms or under our chin when we hold him. Adorable.
He had a pediatrician check up and we found out that he's gained half a pound since being home. He's on fewer than the recommended calories so the good weight gain is great news. He's also, for the first time in his life, on the same 50% Down Syndrome growth curve for height and weight. Up until now he's always been on the 25% curve for length. This is another great sign that he's getting the nutrition he needs. Given our troubles with reflux and feeding tubes its amazing that he's done so well. But, then, if I know about anything, I know how to pack some pounds on.
The next 2 weeks are crazy busy. Tuesday we're going to see a pediatrician who specializes in Oriental Medicine. We're hoping he can help with some of the reflux and congestion issues. Wednesday he has a swallow study where he will be xrayed as he eats a few bites. This will help our speech therapist determine if he is in danger of aspirating while he eats. Next week is our consult for the g-tube, his cardiology appointment, and his sedated hearing test. Plus, he has to get blood drawn once a week because he's still on Coumadine for his blood clot. Thank goodness he has such a great nanny to help with all of this.
4/7/09
Birthday Week
In the true spirit of all things Bobby, we have had a very exciting birthday week.
Last Tuesday the Bubs had a pretty rough day - lots of reflux and gagging. We were afraid his feeding tube had become dislodged so we took him to the ER. 7 hours later we were home, having found out that a) nothing was up with the feeding tube and b) Bobby had a previously undiagnosed heart murmur.
Wednesday he went for his regularly scheduled surgical follow up. They did an echo and found nothing nothing wrong with his heart - just some 'trivial valve regurge', meaning his tricuspid valve is leaking a little bit, but its in the range of normal. The murmur? The APN thinks that its been there a while but his breathing is so much lighter the murmur is now apparent.
Friday we said bye-bye to the oxygen cannula. So nice to be tied to one less thing!
Saturday was the big day! We went to Bubbles Academy, a music school where he took classes pre-surgery. We did a walk in class to celebrate his birthday. He had a fabulous time. He rode in their toy car. We danced. We played with rubber ducks and scarves. His mamas argued over who was getting to do more activities with him. And then we played with bubbles.
After lunch and a nap, I put together his present - a jumperoo. We've avoided getting him one because his physical therapist doesn't like them (she wants him working hard all the time, something we don't believe a year old guy needs to do). He liked it much better than I thought he might - I had expected an adjustment period. He particularly is happy as long as mama was bouncing his seat.
It was a lovely day. We'll have part 2 of his birthday in a couple of weeks when Grandma comes to visit us. I just couldn't get my act together for his mini party in time for the weekend.
Sunday was a rougher day. His chest hurts him when he coughs or sneezes - not surprising for a boy who had his sternum torn apart 7 weeks ago. But over the weekend, every cough became a 20 minute crying jag that led to reflux and his oxygen saturations coming down. His voice was raspy with congestion. We didn't know what to do.
Monday we decided we had to do something. So, we pulled out his tube and Nanny Beth took him to the ER to a) get a smaller tube that would obstruct his throat less b) get deep suctioned, where they put a tube in his nose/throat and suction out all of the mucous. Apparently, he had enough mucous that the nurse actually called someone to witness how much stuff was coming out of his system.
One or both of those things seemed to do the trick. He is much happier. Now, coughs and sneezes cause winces, not meltdowns. His breathing is much clearer. We had a condo meeting at our place last night and he was bubbly. He got fussy at the end, but I was beginning to feel fussy myself, so who can blame him.
This week is his first week of a full therapy schedule - speech 2x, ot 1x, pt 1x. He's getting a swallow study done next Monday to make sure that it is safe for him to eat (make sure he's not aspirating). He still has to have a sedated hearing test this month and his g-tube put in next month. But then I'm hopeful we'll get a break from so many doctor's appointments and spend the summer having fun.
Last Tuesday the Bubs had a pretty rough day - lots of reflux and gagging. We were afraid his feeding tube had become dislodged so we took him to the ER. 7 hours later we were home, having found out that a) nothing was up with the feeding tube and b) Bobby had a previously undiagnosed heart murmur.
Wednesday he went for his regularly scheduled surgical follow up. They did an echo and found nothing nothing wrong with his heart - just some 'trivial valve regurge', meaning his tricuspid valve is leaking a little bit, but its in the range of normal. The murmur? The APN thinks that its been there a while but his breathing is so much lighter the murmur is now apparent.
Friday we said bye-bye to the oxygen cannula. So nice to be tied to one less thing!
Saturday was the big day! We went to Bubbles Academy, a music school where he took classes pre-surgery. We did a walk in class to celebrate his birthday. He had a fabulous time. He rode in their toy car. We danced. We played with rubber ducks and scarves. His mamas argued over who was getting to do more activities with him. And then we played with bubbles.
After lunch and a nap, I put together his present - a jumperoo. We've avoided getting him one because his physical therapist doesn't like them (she wants him working hard all the time, something we don't believe a year old guy needs to do). He liked it much better than I thought he might - I had expected an adjustment period. He particularly is happy as long as mama was bouncing his seat.
It was a lovely day. We'll have part 2 of his birthday in a couple of weeks when Grandma comes to visit us. I just couldn't get my act together for his mini party in time for the weekend.
Sunday was a rougher day. His chest hurts him when he coughs or sneezes - not surprising for a boy who had his sternum torn apart 7 weeks ago. But over the weekend, every cough became a 20 minute crying jag that led to reflux and his oxygen saturations coming down. His voice was raspy with congestion. We didn't know what to do.
Monday we decided we had to do something. So, we pulled out his tube and Nanny Beth took him to the ER to a) get a smaller tube that would obstruct his throat less b) get deep suctioned, where they put a tube in his nose/throat and suction out all of the mucous. Apparently, he had enough mucous that the nurse actually called someone to witness how much stuff was coming out of his system.
One or both of those things seemed to do the trick. He is much happier. Now, coughs and sneezes cause winces, not meltdowns. His breathing is much clearer. We had a condo meeting at our place last night and he was bubbly. He got fussy at the end, but I was beginning to feel fussy myself, so who can blame him.
This week is his first week of a full therapy schedule - speech 2x, ot 1x, pt 1x. He's getting a swallow study done next Monday to make sure that it is safe for him to eat (make sure he's not aspirating). He still has to have a sedated hearing test this month and his g-tube put in next month. But then I'm hopeful we'll get a break from so many doctor's appointments and spend the summer having fun.
4/4/09
4/3/09
Birthday Eve
Tomorrow is a very big day in the Grunsted household. Bubsy is turning one! No exclamatory phrase I might use to describe the big day is going to do justice to what's happened in the last year. Or do justice to the drama surrounding how he got here.
A year ago today Valerie was 38 weeks pregnant. Bubsy had quit cooperating with the non stress tests several weeks earlier so we were doing weekly ultrasounds to check on him. Until April 3rd, the tests had been uneventful.
On this day, we went about our routine. Valerie laid on the table; I sat next to her, holding her hand. The ultrasound tech put the lotion on Valerie's tummy and turned to the screen to check Bobby's movement. Almost immediately, she stood up and ran from the room saying she needed to get a doctor. I asked what was wrong. "His heart rate is 63," she said with a shaking voice. A soon to be born baby's heart rate should be well into the 100s.
Valerie and I sat, waiting, not saying a word. All I could think was that we were going to lose Bobby. After all the excitement, the worry about his heart condition, the fear about the Down Syndrome, he would never be born. My heart went blank.
The tech came back with a doctor. He calmly checked the fetal heart rate - it was now 110. "He must be lying on the umbilical cord," he said. "That's what controls the heart rate."
"There's an 80% chance you're not leaving the hospital pregnant," he told us. My fear subsided as he explained that the situation was not critical, but at 38 weeks, why take a chance?
Valerie was wheeled to the labor floor, where we were placed in an observation unit and our ob/gyn, Dr. Saleh was paged. He was on call that night, a blessing for us because he did not just show up minutes before the birth but was close by all night.
Valerie was hooked up to various monitors and we sat and we waited. At that point, I had no idea that I'd spend much of the next year staring at the blips and waves of various monitors. Things calmed. Bobby's heart rate settled into the mid 100s. I began to think we'd be part of the 20% that got sent home. Then, the heart rate on the monitor dipped againg, right back in the 60s.
Immediately, Valerie's bed was surrounded by doctors and nurses. I stood just outside watching. She was moved from one side to the other as they worked to free the umbilical cord. A nurse placed an oxygen mask over Valerie's mouth, telling her to 'breathe for your baby'. And then as suddenly as it had fallen, the heart rate went back up.
Dr. Saleh arrived at the hospital then, calmly assessed the situation and offered, 'how'd you like to have a baby today'. His demeanor brought me back from the brink. A few minutes later our labor nurse, Lynn, came in and introduced herself. To me she said, 'Try not to panic'. I suppose the stench of fear was all over me.
We were given a labor room and Valerie got a shot of Pitosin to start contractions. The labor itself is really her story to tell. She was brave. I did my best to help. And Bobby's heart rate kept falling. All through the evening into the early hours Lynn came into the room every time his heart rate fell, repositioning Valerie until things stabilized. The stress of the heart rate fluctuations amid Valerie's contractions was nerve wracking - I wanted Bobby here. I wanted a C-section. But I kept thinking of Lynn's words of wisdom 'try not to panic'.
Around midnight Valerie asked for an epideral. That turned out to be the thing that kept us from a C-section, I think. She relaxed when she got the shot and Bobby took a breather as well. I stared at more monitors. For several hours all was quiet while Valerie finished her contractions.
At 6 am Dr. Saleh decided it was time to push. Suddenly, our lonesome little labor room was filled with nurses and neonatologists. Lynn's shift was up which made me sad - after spending the night helping us, she missed the big moment.
And it was a big moment. Valerie pushed and screamed. I encouraged her every time she pushed but I could tell she was only listening to Dr. Saleh and the occasional encouragment he gave her after a particularly fruitful push. She knew he was getting her to the end. Bobby's head was soon visible. Amazing. And then at the last minute his heart rate dipped one last time. "He has to come now," Dr. Saleh said, and he called for the vacuum. That worked the first time, Bobby, cone head and all came out, wrapped in a tiny ball. He let out a wonderful cry.
Immediately he was passed to the neonatologist, surrounded by her students. I stood by Valerie, waiting and watching Bobby, amazed at how big he looked once he was stretched out. And I looked to see if he had Down Syndrome. We had been told our changes were greater than 50/50 and in our hearts Valerie and I both believed he had Ds, but still, I hoped. I heard the neonatologist reciting symptoms to her students, 'short appendages, flat nose, low muscle tone...' One of the students was looking at me pitingly. It pissed me off. "Don't pity me on the day my son is born," I thought.
I walked over to the doctor. "Does he have Down Syndrome?" I asked.
"He has the signs, yes," she answered.
"That's what we thought," I answered, smiling.
I gave the news to Valerie who absorbed it without a reaction. She was too busy watching as the nurses brought Bubsy to her. She held him face to face for a few moments. The sun of the new day shined on them both. All I could think of was that he looked exactly like his mama. Beautiful. Then away he went.
Echos and exams filled his next few hours. Valerie and I made our phone calls. A new neonatologist visited us, telling us that Bobby was doing well, given his circumstance. Still, it was very scary. A new baby is scary enough. A sick new baby that just kept us up all night worrying about his heart rate...that's a new level of terror. In the face of feeling hopeless to help his medical condition we decided to have him baptized. Whatever else about his future was out of his control, we could make sure we did that for him.
So, the first time I ever held Bobby was the afternoon of April 4th, when I held him as he was baptized. That's a very precious memory to me, welcoming him to our family and the world of faith at the same time. Doing that for my son made me feel like a parent for the first time.
A year ago today Valerie was 38 weeks pregnant. Bubsy had quit cooperating with the non stress tests several weeks earlier so we were doing weekly ultrasounds to check on him. Until April 3rd, the tests had been uneventful.
On this day, we went about our routine. Valerie laid on the table; I sat next to her, holding her hand. The ultrasound tech put the lotion on Valerie's tummy and turned to the screen to check Bobby's movement. Almost immediately, she stood up and ran from the room saying she needed to get a doctor. I asked what was wrong. "His heart rate is 63," she said with a shaking voice. A soon to be born baby's heart rate should be well into the 100s.
Valerie and I sat, waiting, not saying a word. All I could think was that we were going to lose Bobby. After all the excitement, the worry about his heart condition, the fear about the Down Syndrome, he would never be born. My heart went blank.
The tech came back with a doctor. He calmly checked the fetal heart rate - it was now 110. "He must be lying on the umbilical cord," he said. "That's what controls the heart rate."
"There's an 80% chance you're not leaving the hospital pregnant," he told us. My fear subsided as he explained that the situation was not critical, but at 38 weeks, why take a chance?
Valerie was wheeled to the labor floor, where we were placed in an observation unit and our ob/gyn, Dr. Saleh was paged. He was on call that night, a blessing for us because he did not just show up minutes before the birth but was close by all night.
Valerie was hooked up to various monitors and we sat and we waited. At that point, I had no idea that I'd spend much of the next year staring at the blips and waves of various monitors. Things calmed. Bobby's heart rate settled into the mid 100s. I began to think we'd be part of the 20% that got sent home. Then, the heart rate on the monitor dipped againg, right back in the 60s.
Immediately, Valerie's bed was surrounded by doctors and nurses. I stood just outside watching. She was moved from one side to the other as they worked to free the umbilical cord. A nurse placed an oxygen mask over Valerie's mouth, telling her to 'breathe for your baby'. And then as suddenly as it had fallen, the heart rate went back up.
Dr. Saleh arrived at the hospital then, calmly assessed the situation and offered, 'how'd you like to have a baby today'. His demeanor brought me back from the brink. A few minutes later our labor nurse, Lynn, came in and introduced herself. To me she said, 'Try not to panic'. I suppose the stench of fear was all over me.
We were given a labor room and Valerie got a shot of Pitosin to start contractions. The labor itself is really her story to tell. She was brave. I did my best to help. And Bobby's heart rate kept falling. All through the evening into the early hours Lynn came into the room every time his heart rate fell, repositioning Valerie until things stabilized. The stress of the heart rate fluctuations amid Valerie's contractions was nerve wracking - I wanted Bobby here. I wanted a C-section. But I kept thinking of Lynn's words of wisdom 'try not to panic'.
Around midnight Valerie asked for an epideral. That turned out to be the thing that kept us from a C-section, I think. She relaxed when she got the shot and Bobby took a breather as well. I stared at more monitors. For several hours all was quiet while Valerie finished her contractions.
At 6 am Dr. Saleh decided it was time to push. Suddenly, our lonesome little labor room was filled with nurses and neonatologists. Lynn's shift was up which made me sad - after spending the night helping us, she missed the big moment.
And it was a big moment. Valerie pushed and screamed. I encouraged her every time she pushed but I could tell she was only listening to Dr. Saleh and the occasional encouragment he gave her after a particularly fruitful push. She knew he was getting her to the end. Bobby's head was soon visible. Amazing. And then at the last minute his heart rate dipped one last time. "He has to come now," Dr. Saleh said, and he called for the vacuum. That worked the first time, Bobby, cone head and all came out, wrapped in a tiny ball. He let out a wonderful cry.
Immediately he was passed to the neonatologist, surrounded by her students. I stood by Valerie, waiting and watching Bobby, amazed at how big he looked once he was stretched out. And I looked to see if he had Down Syndrome. We had been told our changes were greater than 50/50 and in our hearts Valerie and I both believed he had Ds, but still, I hoped. I heard the neonatologist reciting symptoms to her students, 'short appendages, flat nose, low muscle tone...' One of the students was looking at me pitingly. It pissed me off. "Don't pity me on the day my son is born," I thought.
I walked over to the doctor. "Does he have Down Syndrome?" I asked.
"He has the signs, yes," she answered.
"That's what we thought," I answered, smiling.
I gave the news to Valerie who absorbed it without a reaction. She was too busy watching as the nurses brought Bubsy to her. She held him face to face for a few moments. The sun of the new day shined on them both. All I could think of was that he looked exactly like his mama. Beautiful. Then away he went.
Echos and exams filled his next few hours. Valerie and I made our phone calls. A new neonatologist visited us, telling us that Bobby was doing well, given his circumstance. Still, it was very scary. A new baby is scary enough. A sick new baby that just kept us up all night worrying about his heart rate...that's a new level of terror. In the face of feeling hopeless to help his medical condition we decided to have him baptized. Whatever else about his future was out of his control, we could make sure we did that for him.
So, the first time I ever held Bobby was the afternoon of April 4th, when I held him as he was baptized. That's a very precious memory to me, welcoming him to our family and the world of faith at the same time. Doing that for my son made me feel like a parent for the first time.
3/31/09
3/30/09
The Final Countdown
Well, we're almost there - we've almost made it through Bobby's first year of life. He was born 4/4/08 at 7:07 am and weighed 6 lbs and 12 oz. If that's not being born on a numerically lucky star, I don't know what is.
His at home recuperation is going great. He got partially weaned from his oxygen last Wednesday and I have high hopes that he will be off of it completely after his Wednesday check up with surgery.
He's gaining some weight after basically holding steady during his month in the hospital. The continuous feeds are awkward, but its so nice for him and us that he doesn't get sick all the time anymore. Some days he actually wears the same outfit all day. We met with his GI doctor last week who formally recommended a g-tube. We knew that was coming. Our big decision is around whether or not he gets a nissen fundoplication. This procedure tightens the sphincter that connects the stomach and the esophagus, preventing reflux. If not done well, it can also cause long term problems. We have a meeting with a surgeon later in April to discuss the pros and cons. The g-tube will hopefully come in May.
Therapy has slowly restarted. He's doing tummy time and some simple exercises to help him gain his strength back. He's siting up nicely in his booster chair.
We had some issues last week with him not sleeping well. Valerie and I each spent a couple of nights getting little to no sleep. The surgery APN told us that it was an adjustment issue with being out of the hospital, that he was used to the stimulation of being in the ICU. Whatever it was, it was wicked. Things are getting better on that front as he's back to sleeping until 6 or 7 am.
Bobby has also developed a very crabby side to his otherwise perfect disposition. He screams if he gets put down when he wants to be held. Really screams. Its the first time we've had to really grit our teeth and let him cry. I know it's normal. I just somehow hoped we'd get a pass on some of the normal parenting trials, given that we've had some unique ones to overcome. But, given who his parents are, there was really no chance we were going to bypass the development of an opinionated boy.
His at home recuperation is going great. He got partially weaned from his oxygen last Wednesday and I have high hopes that he will be off of it completely after his Wednesday check up with surgery.
He's gaining some weight after basically holding steady during his month in the hospital. The continuous feeds are awkward, but its so nice for him and us that he doesn't get sick all the time anymore. Some days he actually wears the same outfit all day. We met with his GI doctor last week who formally recommended a g-tube. We knew that was coming. Our big decision is around whether or not he gets a nissen fundoplication. This procedure tightens the sphincter that connects the stomach and the esophagus, preventing reflux. If not done well, it can also cause long term problems. We have a meeting with a surgeon later in April to discuss the pros and cons. The g-tube will hopefully come in May.
Therapy has slowly restarted. He's doing tummy time and some simple exercises to help him gain his strength back. He's siting up nicely in his booster chair.
We had some issues last week with him not sleeping well. Valerie and I each spent a couple of nights getting little to no sleep. The surgery APN told us that it was an adjustment issue with being out of the hospital, that he was used to the stimulation of being in the ICU. Whatever it was, it was wicked. Things are getting better on that front as he's back to sleeping until 6 or 7 am.
Bobby has also developed a very crabby side to his otherwise perfect disposition. He screams if he gets put down when he wants to be held. Really screams. Its the first time we've had to really grit our teeth and let him cry. I know it's normal. I just somehow hoped we'd get a pass on some of the normal parenting trials, given that we've had some unique ones to overcome. But, given who his parents are, there was really no chance we were going to bypass the development of an opinionated boy.
3/23/09
3/21/09
Hospital Recap
Bobby being home is a wonderful thing. He is doing very well and is very happy to be out of the hospital. Bobby loves to go out and its so nice to be able to take him places again. Between the surgery and the throwing up all the time pre-surgery, its been a while since we had a family day out. Today we went to Barnes and Noble and Target, made many purchases for the Bubs, and enjoyed our smiley, giggling boy very much.
It's very hard to digest what's happened in the last month. We certainly didn't expect the marathon that we got. It was a very scary time. It was a very trying time. I think my best bet is to let Bubsy himself speak to the difficulties he faced.
It's very hard to digest what's happened in the last month. We certainly didn't expect the marathon that we got. It was a very scary time. It was a very trying time. I think my best bet is to let Bubsy himself speak to the difficulties he faced.
3/19/09
3/18/09
Big Bob, Little Bobby
It's finally going to happen. 28 days after coming into the hospital for a 5-7 day procedure, Bobby is going home tomorrow. The oxygen tank and pulsox (also called a pulse oximeter) are sitting next to his bed, waiting for our departure. We've been trained to use both. After many phone calls, Valerie has arranged delivery of a large oxygen tank to our house tomorrow. The prescriptions are sent to the pharmacy. Bobby's had his discharge echocardiogram. His course of treatment has been cleared by cardiology, pulmonology, and ENT. We're going home.
So many people have helped get us here. The surgeons, countless nurses. Friends and family who have kept Valerie and I sane through this (or at least as sane as we were when we started out). I joke that Bobby is well on his way to being a million dollar baby. Better, I think, to judge the magnitude of what he's been through by how many thank yous we owe.
And among those who we owe a debt is a man who isn't with us anymore. My brother Bob - one of the men Bobby is named after - passed away in November from a brain tumor. I comforted myself when he left that Bobby may have lost his godfather, but he gained a guardian angel. Bob was a very gentle man, very strong in his faith, a man who never complained throughout his illness. He withstood brutal chemo even though the doctors gave him little chance of survival. Like Bobby, he endured blood clots, breathing tubes. In the end, even my brother's strength couldn't win out over the chemotherapy and cancer that ravaged his body. But his spirit remains.
Bobby has shown that same patience and strength throughout his stay in the hospital. No matter how much he is poked and prodded, he starts each day fresh, with a smile and a desire to love and be loved. As day 27 comes to an end he has every right to be fussy - he's had a tube dropped from his nose to his small intestine, he's been held down for an echo and an x-ray, he's had his blood pressure and chest listened to countless times. Instead, he's watching Sesame Street, content as can be.
In the world of Down Syndrome, I think it's easy to obsess about developmental milestones. At our last therapy assessment, the therapists agreed that Bobby's development was that of a 4 or 5 month old. I myself have used that language to describe his progress to doctors. But it's an unfair convention.
True, in his quest to sit up alone, to crawl, his progress is consistent with a typical 4 or 5 month old. But what about the development of the strength required to survive 2 heart surgeries? His patience with repeated medical intrusions? His forgiveness of all the things we've had to do to him to make him well? In those categories he's more than lived up to the legacy of my 50 year old brother, partly, I believe, because his uncle has been holding his hand throughout the ordeal, holding the boat steady while we crossed some rough waters.
So many people have helped get us here. The surgeons, countless nurses. Friends and family who have kept Valerie and I sane through this (or at least as sane as we were when we started out). I joke that Bobby is well on his way to being a million dollar baby. Better, I think, to judge the magnitude of what he's been through by how many thank yous we owe.
And among those who we owe a debt is a man who isn't with us anymore. My brother Bob - one of the men Bobby is named after - passed away in November from a brain tumor. I comforted myself when he left that Bobby may have lost his godfather, but he gained a guardian angel. Bob was a very gentle man, very strong in his faith, a man who never complained throughout his illness. He withstood brutal chemo even though the doctors gave him little chance of survival. Like Bobby, he endured blood clots, breathing tubes. In the end, even my brother's strength couldn't win out over the chemotherapy and cancer that ravaged his body. But his spirit remains.
Bobby has shown that same patience and strength throughout his stay in the hospital. No matter how much he is poked and prodded, he starts each day fresh, with a smile and a desire to love and be loved. As day 27 comes to an end he has every right to be fussy - he's had a tube dropped from his nose to his small intestine, he's been held down for an echo and an x-ray, he's had his blood pressure and chest listened to countless times. Instead, he's watching Sesame Street, content as can be.
In the world of Down Syndrome, I think it's easy to obsess about developmental milestones. At our last therapy assessment, the therapists agreed that Bobby's development was that of a 4 or 5 month old. I myself have used that language to describe his progress to doctors. But it's an unfair convention.
True, in his quest to sit up alone, to crawl, his progress is consistent with a typical 4 or 5 month old. But what about the development of the strength required to survive 2 heart surgeries? His patience with repeated medical intrusions? His forgiveness of all the things we've had to do to him to make him well? In those categories he's more than lived up to the legacy of my 50 year old brother, partly, I believe, because his uncle has been holding his hand throughout the ordeal, holding the boat steady while we crossed some rough waters.
1 More Day...but don't jinx it
Bobby had a pretty good night. His saturations went back up into the mid 70s to low 80s. So, the dip yesterday wasn't a harbinger of bad things to come. It did, however, guarantee that we're going home on oxygen. But we're going home...tomorrow they say.
On Bobby's first day in the ICU, they gave us a sheet that is taped to his bed during his stay. It asks for his name, his weight, and his likes and dislikes. We didn't have a lot to say...he likes You Are my Sunshine; he doesn't like things being put into his mouth.
A month later, we have a revised list.
Bobby likes:
Going home on time
Cannulas
Spraying on his nurses
Pooping all over the sheets
Eating without throwing up
Raspberrying and making dinosaur noises
Music Therapy
Being held
Being held
Being held
Going home on time
Bobby dislikes:
People that disrespect the 'hawk
CPAP machines
CPAP head gear stretched over ears that are newly tubed
CPAP machines
Sedatives that aren't serious
Being mocked
Teething the week after open heart surgery
Severe diaper rash the week after open heart surgery
Multiple intubations/extubations
Nurses who tell mama she doesn't know how to read the monitor
Doctors who tell mama she didn't try hard enough to get him a hearing test
Mamas hanging out in the room all night and ruining his nurse sugar time
Music cds that aren't "Country Western Lullabys"
People that disrespect the 'hawk
On Bobby's first day in the ICU, they gave us a sheet that is taped to his bed during his stay. It asks for his name, his weight, and his likes and dislikes. We didn't have a lot to say...he likes You Are my Sunshine; he doesn't like things being put into his mouth.
A month later, we have a revised list.
Bobby likes:
Going home on time
Cannulas
Spraying on his nurses
Pooping all over the sheets
Eating without throwing up
Raspberrying and making dinosaur noises
Music Therapy
Being held
Being held
Being held
Going home on time
Bobby dislikes:
People that disrespect the 'hawk
CPAP machines
CPAP head gear stretched over ears that are newly tubed
CPAP machines
Sedatives that aren't serious
Being mocked
Teething the week after open heart surgery
Severe diaper rash the week after open heart surgery
Multiple intubations/extubations
Nurses who tell mama she doesn't know how to read the monitor
Doctors who tell mama she didn't try hard enough to get him a hearing test
Mamas hanging out in the room all night and ruining his nurse sugar time
Music cds that aren't "Country Western Lullabys"
People that disrespect the 'hawk
3/17/09
26 days down, 2 more to go...maybe
After Bobby's fabulous yesterday, the doctors at morning rounds predicted a discharge date of Thursday. That was until Bobby spent the afternoon satting in the low 70s, down about 10 points from where he was over the weekend. Curses!
Only time will tell if this is something serious or if its simply the Bubs adjusting to being on much less oxygen support. He's been better tonight, giving me hope that its the latter.
Whatever Irish blood Bobby has (and its not much) is hopefully going to do its job tonight and keep him oxygenated. If it can't, the Polish and Norwegian hemoglobin in him is going to have to buck up and do the job.
Only time will tell if this is something serious or if its simply the Bubs adjusting to being on much less oxygen support. He's been better tonight, giving me hope that its the latter.
Whatever Irish blood Bobby has (and its not much) is hopefully going to do its job tonight and keep him oxygenated. If it can't, the Polish and Norwegian hemoglobin in him is going to have to buck up and do the job.
3/16/09
Still Getting Better
Today was a big day for Bobby. He had his bronchoscopy this afternoon to check to see if his airways and lungs have healed from his multiple intubations. And, the news was universally good. The damage is all but gone. He has no scarring on his vocal cords, meaning no surgery to correct tht in the future. He has no acid reflux damage, meaning that we won't need to get the gastric tube before we can go home. And, he got through the procedure without being intubated, meaning we avoid a setback in his recovery.
Now, we go about weaning him off of his oxygen support. After the bronchoscopy they got rid of his high flow. This is a special machine that, along with giving oxygen help, puts some positive pressure into his lungs. Essentially, it helps force some of the oxygen in. Bobby needs to be off of that before we can leave the hospital. So far, he's done quite well, His sats are in the high 70s, a bit lower than they were on the high flow, but that's to be expected.
Starting tomorrow they will work on weaning him off of the oxygen itself. We still don't know for sure if he will need oxygen when he goes home. At this point, it's something we'd willingly take on. My guess, based on nothing much, is that he'll need oxygen at night but will be OK during the day.
We will also go home on round the clock continuous feeds. He has an nj tube still - that's the tube that goes through his nose down to his small intestine. Continuous feeds are a pain because you have to constantly carry around the pump. If he pulls the tube out, we have to go to the emergency room to get it replaced. But, it is so nice to have a boy who doesn't throw up several times a day. It's really really nice. I mentioned to Nanny Beth today that Bobby seems gigglier now than even before the surgery. Her thoughts? "He's not throwing up all the time." Duh. So this is an issue that will need resolving sooner or later. We still might go to a g-tube. But at least we can take the time to consider our options instead of rushing to do this before we leave the hospital.
Another outstanding issue is that Bobby needs a hearing test. The test has to be done while he is sedated, which is obviously a bit tricky. The ENT wanted to do the test today, but after talking things through, the anesthesiologist questioned adding that procedure to the bronch. The bronch itself takes about 10 minutes, but Bobby needs to be heavily sedated and paralyzed during the procedure. Extending the anesthetic for the hearing test, which takes about an hour and a half, would mean almost certain intubation. If we come back to do the test in a few weeks, he'll still have to be sedated, but with much lighter medication that will not require him to have a breathing tube. Confusing? It was very confusing as the ENT, anesthesiologist, surgery APN, nurse, and Valerie and I hashed it out minutes before the procedure. The ENT felt like we were negating the importance of the hearing test; I was questioning why we were doing the bronch when the ENT said that there would be noticeable symptoms if the airway was causing the low saturations; the APN was disagreeing with that; Valerie and I disagreed about whether to do the hearing test, etc. So goes the parenting of a medically complex child.
Speaking of which, the ENT really ticked us off today. He kept saying that Bobby should have had a hearing test 4 months ago so that he could have had a hearing aid if necessary. First of all, Valerie tried multiple times to get him tested. Bobby failed two outpatient hearing tests attempted, and she went back and forth between audiology and ENT visits to resolve the issues, including his ear canals were too small for the test; he had wax build up; he needed ear tubes, etc. Second, hearing is obviously important. But there is a hierarchy of medical needs and a bad heart is number one on Bobby's list. Number two is throwing up several times a day. Number 3, hearing and sight. It really, really ticks me off to have this doctor judging us. Bobby has been in the hospital for over a fifth of his life. He passed the newborn hearing test. He very obviously hears us talking and hears music. So we made a decision not to aggressively pursue ears and eyes stuff until the heart condition was resolved. I understand that the doctor probably feels like we don't appreciate the importance of his specialty. I don't think he understands the challenges of parenting Bobby. (This is where I really would like to spend a few lines cursing, but I like this blog to be a family affair. Plus my mama told me once that only people who lack imaginations need to use curse words).
And anyway, did I mention that the bronch went really well today?
Now, we go about weaning him off of his oxygen support. After the bronchoscopy they got rid of his high flow. This is a special machine that, along with giving oxygen help, puts some positive pressure into his lungs. Essentially, it helps force some of the oxygen in. Bobby needs to be off of that before we can leave the hospital. So far, he's done quite well, His sats are in the high 70s, a bit lower than they were on the high flow, but that's to be expected.
Starting tomorrow they will work on weaning him off of the oxygen itself. We still don't know for sure if he will need oxygen when he goes home. At this point, it's something we'd willingly take on. My guess, based on nothing much, is that he'll need oxygen at night but will be OK during the day.
We will also go home on round the clock continuous feeds. He has an nj tube still - that's the tube that goes through his nose down to his small intestine. Continuous feeds are a pain because you have to constantly carry around the pump. If he pulls the tube out, we have to go to the emergency room to get it replaced. But, it is so nice to have a boy who doesn't throw up several times a day. It's really really nice. I mentioned to Nanny Beth today that Bobby seems gigglier now than even before the surgery. Her thoughts? "He's not throwing up all the time." Duh. So this is an issue that will need resolving sooner or later. We still might go to a g-tube. But at least we can take the time to consider our options instead of rushing to do this before we leave the hospital.
Another outstanding issue is that Bobby needs a hearing test. The test has to be done while he is sedated, which is obviously a bit tricky. The ENT wanted to do the test today, but after talking things through, the anesthesiologist questioned adding that procedure to the bronch. The bronch itself takes about 10 minutes, but Bobby needs to be heavily sedated and paralyzed during the procedure. Extending the anesthetic for the hearing test, which takes about an hour and a half, would mean almost certain intubation. If we come back to do the test in a few weeks, he'll still have to be sedated, but with much lighter medication that will not require him to have a breathing tube. Confusing? It was very confusing as the ENT, anesthesiologist, surgery APN, nurse, and Valerie and I hashed it out minutes before the procedure. The ENT felt like we were negating the importance of the hearing test; I was questioning why we were doing the bronch when the ENT said that there would be noticeable symptoms if the airway was causing the low saturations; the APN was disagreeing with that; Valerie and I disagreed about whether to do the hearing test, etc. So goes the parenting of a medically complex child.
Speaking of which, the ENT really ticked us off today. He kept saying that Bobby should have had a hearing test 4 months ago so that he could have had a hearing aid if necessary. First of all, Valerie tried multiple times to get him tested. Bobby failed two outpatient hearing tests attempted, and she went back and forth between audiology and ENT visits to resolve the issues, including his ear canals were too small for the test; he had wax build up; he needed ear tubes, etc. Second, hearing is obviously important. But there is a hierarchy of medical needs and a bad heart is number one on Bobby's list. Number two is throwing up several times a day. Number 3, hearing and sight. It really, really ticks me off to have this doctor judging us. Bobby has been in the hospital for over a fifth of his life. He passed the newborn hearing test. He very obviously hears us talking and hears music. So we made a decision not to aggressively pursue ears and eyes stuff until the heart condition was resolved. I understand that the doctor probably feels like we don't appreciate the importance of his specialty. I don't think he understands the challenges of parenting Bobby. (This is where I really would like to spend a few lines cursing, but I like this blog to be a family affair. Plus my mama told me once that only people who lack imaginations need to use curse words).
And anyway, did I mention that the bronch went really well today?
3/15/09
Better Every Day
Its a beautiful day here in Chicago and our mood is matching the temperature. Things are looking up for Bubsy as his saturations are creeping up into the high 70s and low 80s. He hasn't had a fever yet today. He's acting nearly as silly as his Mama Valerie.
3/14/09
Hospital Bounty
When I got sick as a little girl, my dad always came home from work with a present for me. The gift was something to entertain me while I was in bed - an activity book, a comic book, or once when I got car sick but waited to throw up until I was out of his car, he bought me a set of Trixie Belden mysteries. If getting car sick is worth a Trixie Belden mystery book, what is heart surgery worth? Well, take a look at the pictures on the left to see a portion of Bubsy's hospital booty. The pony is waiting in the parking lot for his discharge.
We've settled into a quieter routine. His saturations are mostly in the 70s and occasionally creep up into the 80s, where they ideally should be. And, they sometimes go down into the 60s and 50s where they should never be.
He's also been spiking high fevers once or twice a day. His blood has been cultured many times, his urine and poo and snot have all been tested and they still don't know what's causing the fevers.
He's having another bronchoscopy on Monday to see if he has some sort of infection from his multiple intubations. The other theory is that he is continuing to reflux, even though he's using a feeding tube that bypasses his stomach and sends formula directly to his small intestine. The reflux may be going into his lungs and preventing them from healing from the surgery and multiple intubations.
If this is the case we may get a g-tube. The feeding tubes that pass through his nose force the sphincter at the top of his stomach to stay open all of the time. A gtube which goes directly to his belly will allow the sphincter to close, and thus stop some or all of the reflux. There are also some more drastic versions - there is a g-j tube that is inserted into his small intestine. I'm not very excited about that because that would force us to keep Bobby on round the clock feeds for the long term (the intestines can't handle large portions of food at once so instead of eating meals, you have to do continuous feeds). Another option is something called a nissen fundoplication - this actually tightens the area at the top of the stomach, helping to slow the reflux.
We're open to the g-tube. Our main problem is that Bobby's GI doctor is at another hospital. The GI department at Children's has repeatedly proven themselves to be inefficient, incompetent, etc so we don't want to consult with them. But, Bobby can't leave Children's to get a consult somewhere else. It's awkward and frustrating that Children's allows this department to operate at a lower quality level than the rest of the hospital. We've worked with cardiology (obviously), ent, and opthamalogy and have been universally satisfied. So, we'll have to figure out a way to get ourselves satisfactorily informed before we make a feeding tube decision.
The good doctors in the ENT department that are doing the bronch on Monday are very efficient. They are combining the procedure with an audiology test. Bobby passed his newborn hearing test but hasn't been able to pass another test yet. The cause might be fluid build up that his ear tubes will take care of, but he might also have a hearing problem. That's common for kids with Ds. We know he hears some, we just need to find out if he needs a hearing aid. That will happen Monday.
In the meantime, we're having a quiet weekend. Bobby is napping now and Valerie and I are just hanging out. We left for lunch earlier and got caught up in a mass of St. Patrick's Day drunkards. That seems so surreal - this hospital life is all consuming. Fortunately, we were able to hop on Bobby's pony and escape the craziness.
We've settled into a quieter routine. His saturations are mostly in the 70s and occasionally creep up into the 80s, where they ideally should be. And, they sometimes go down into the 60s and 50s where they should never be.
He's also been spiking high fevers once or twice a day. His blood has been cultured many times, his urine and poo and snot have all been tested and they still don't know what's causing the fevers.
He's having another bronchoscopy on Monday to see if he has some sort of infection from his multiple intubations. The other theory is that he is continuing to reflux, even though he's using a feeding tube that bypasses his stomach and sends formula directly to his small intestine. The reflux may be going into his lungs and preventing them from healing from the surgery and multiple intubations.
If this is the case we may get a g-tube. The feeding tubes that pass through his nose force the sphincter at the top of his stomach to stay open all of the time. A gtube which goes directly to his belly will allow the sphincter to close, and thus stop some or all of the reflux. There are also some more drastic versions - there is a g-j tube that is inserted into his small intestine. I'm not very excited about that because that would force us to keep Bobby on round the clock feeds for the long term (the intestines can't handle large portions of food at once so instead of eating meals, you have to do continuous feeds). Another option is something called a nissen fundoplication - this actually tightens the area at the top of the stomach, helping to slow the reflux.
We're open to the g-tube. Our main problem is that Bobby's GI doctor is at another hospital. The GI department at Children's has repeatedly proven themselves to be inefficient, incompetent, etc so we don't want to consult with them. But, Bobby can't leave Children's to get a consult somewhere else. It's awkward and frustrating that Children's allows this department to operate at a lower quality level than the rest of the hospital. We've worked with cardiology (obviously), ent, and opthamalogy and have been universally satisfied. So, we'll have to figure out a way to get ourselves satisfactorily informed before we make a feeding tube decision.
The good doctors in the ENT department that are doing the bronch on Monday are very efficient. They are combining the procedure with an audiology test. Bobby passed his newborn hearing test but hasn't been able to pass another test yet. The cause might be fluid build up that his ear tubes will take care of, but he might also have a hearing problem. That's common for kids with Ds. We know he hears some, we just need to find out if he needs a hearing aid. That will happen Monday.
In the meantime, we're having a quiet weekend. Bobby is napping now and Valerie and I are just hanging out. We left for lunch earlier and got caught up in a mass of St. Patrick's Day drunkards. That seems so surreal - this hospital life is all consuming. Fortunately, we were able to hop on Bobby's pony and escape the craziness.
3/13/09
Bobby Update
Just a quick update before I start work. Life in Bubbyville is...stable. Its hard to say how much he's improved over the last couple of days, but he has definitely stopped getting worse. He's in a pattern where his oxygen saturations are mostly in the 70s and fall into the 60s during a predictable time (runs a fever, is sound asleep, or, as the nurse reported last night, right before there is a big explosion in the bed)
The most troubling issue is that he spikes high temps (102+) occasionally for no apparent reason. They've cultured his blood many times, but with no luck. Now he's on antibiotics, so its unlikely any culture will grow anyway.
He's getting another bronchoscopy on Monday to see if the issue might be that he's got an infection from being intubated so many times. They don't much expect to find anything, but its time to turn those unturned stones.
We are certainly starting to feel better. Bobby is a happy boy between his fevers and is ready to play. He's also recovered enough from his chest incision that he is enjoying being held again. Its a little slice of heaven to have him snuggle close. He is pure sugar.
The most troubling issue is that he spikes high temps (102+) occasionally for no apparent reason. They've cultured his blood many times, but with no luck. Now he's on antibiotics, so its unlikely any culture will grow anyway.
He's getting another bronchoscopy on Monday to see if the issue might be that he's got an infection from being intubated so many times. They don't much expect to find anything, but its time to turn those unturned stones.
We are certainly starting to feel better. Bobby is a happy boy between his fevers and is ready to play. He's also recovered enough from his chest incision that he is enjoying being held again. Its a little slice of heaven to have him snuggle close. He is pure sugar.
3/10/09
Life at the Hospital
Today is the first day since Bubsy went into the hospital that Valerie and I both worked. We have to - we can't afford to keep taking FMLA time. Nanny Beth manned the hospital. Words can't describe how fortunate we are to have someone like her that we trust to be there when we can't.
Valerie is off to the hospital now. I'm taking the night off as I was up most of last night with Bobby. He desatted into the 50s again. He threw up gastric juices (because the nj tube goes into his intestines, he has no formula to throw up). The doctor put him on antibiotics and upped his oxygen help. They tried to insert an IV for his antibiotics. As usual, they failed but only after riling up the baby. Today Bobby slept because, like mama, he was up most of last night.
One interesting thing - the respiratory therapist changed his high flow machine to something that the therapist claims 'works much better' than the one he had. Why have we been struggling to keep his sats up for days only now to find that there's is one that 'works much better'? Arghh. At leat we put an end to Bobby getting stuck for IVs and such - we've declared that there is no more sticking without the help of an ultrasound. Sweet Bubs looks like a pin cushion.
I'm hoping we'll fall into a new hospital routine. The doctors are saying Bobby will be there at least through next week. Personally, I think it could be 2-3 weeks after that before his lungs heal. So we have to figure out how to give him the attention he needs and still keep our jobs and, honestly, sleep enough. Not surprisingly, Valerie and I are both getting sick. There's just never enough time in the day.
Its interesting. Before we knew about Bobby's Ds/heart issues, I used to worry about how Bobby would be impacted by having 2 mamas. I joke that the first day I found out Bobby had Ds was the last day I worried about being a gay parent. Now, I'm just grateful that I'm going through this with a partner whom I trust to stand in with me and to support me when I need some propping up. I can't imagine doing this with anyone else.
Valerie is off to the hospital now. I'm taking the night off as I was up most of last night with Bobby. He desatted into the 50s again. He threw up gastric juices (because the nj tube goes into his intestines, he has no formula to throw up). The doctor put him on antibiotics and upped his oxygen help. They tried to insert an IV for his antibiotics. As usual, they failed but only after riling up the baby. Today Bobby slept because, like mama, he was up most of last night.
One interesting thing - the respiratory therapist changed his high flow machine to something that the therapist claims 'works much better' than the one he had. Why have we been struggling to keep his sats up for days only now to find that there's is one that 'works much better'? Arghh. At leat we put an end to Bobby getting stuck for IVs and such - we've declared that there is no more sticking without the help of an ultrasound. Sweet Bubs looks like a pin cushion.
I'm hoping we'll fall into a new hospital routine. The doctors are saying Bobby will be there at least through next week. Personally, I think it could be 2-3 weeks after that before his lungs heal. So we have to figure out how to give him the attention he needs and still keep our jobs and, honestly, sleep enough. Not surprisingly, Valerie and I are both getting sick. There's just never enough time in the day.
Its interesting. Before we knew about Bobby's Ds/heart issues, I used to worry about how Bobby would be impacted by having 2 mamas. I joke that the first day I found out Bobby had Ds was the last day I worried about being a gay parent. Now, I'm just grateful that I'm going through this with a partner whom I trust to stand in with me and to support me when I need some propping up. I can't imagine doing this with anyone else.
3/9/09
The Fever for the Flavor of Getting Discharged
Bobby had a very restless night here at the PICU, sleeping for a maximum of 2 hours at a stretch. In spite of another day of regular doses of Tylenol, he spiked another, more serious fever of 102.9 F this morning. The docs are running more cultures, and are still waiting on the results of the respiratory shell panel done yesterday. If it's bacterial, they'll treat it with antibiotics, if it's viral, we'll wait it out.
Meanwhile, Valerie spoke with both of the surgeons and the advanced practice nurse, and it looks more and more likely that Bobby will be coming home with an oxygen tank in tow. They all seem very calm about it, and try to reassure her that it's temporary until Bobby gets stronger. Dr Kaushal has been talking to some of his colleagues across the country because he can't understand why Bobby's sats continue to be low. His conclusion is that Bobby's Down Syndrome is getting in the way of his recovery from the heart surgery because Ds frequently results in the lungs being compromised in some way. So, with some short term oxygen help and more time to recover, the hope is things will improve.
While we might like more clarity, the fact is, its good that Bobby does not have any of the usual complications of this surgery. If his pulmonary pressures were high (the most logical explanation for low saturations), he'd potentially be sprouting collateral veins for the next couple of years. If the Glenn shunt wasn't well constructed, it would mean an extra open heart surgery this week. Because Bobby's low saturations have no clear cause, we have ample room to believe that the situation may resolve itself in a matter of weeks. Its just a challenge for Bobby's computer programmer and market researcher mamas to trade a clear diagnosis for blind faith.
Bobby needs to be weaned off high flow cannula before we can go home. Unlike a regular cannula, the high flow sends some positive pressure into his lungs, giving them a little extra oomph on the inhale. But, the weaning won't start in earnest until Bobby's virus/infection is better. The poor thing has been laying on a bed of ice packs today to keep cool and is much more comfortable than he was last night. Valerie and I just sit and wait.
In my opinion, the hardest part about hospital life is that, most of the time, it's mind numbingly boring and the boredom is only broken by moments of extreme stress while baby boy gets extubated or his sats fall into the 50s. We all have our ways of dealing with boredom - you may have noticed that I like to blog. Valerie spent her time yesterday doing the Hokey Pokey.
Meanwhile, Valerie spoke with both of the surgeons and the advanced practice nurse, and it looks more and more likely that Bobby will be coming home with an oxygen tank in tow. They all seem very calm about it, and try to reassure her that it's temporary until Bobby gets stronger. Dr Kaushal has been talking to some of his colleagues across the country because he can't understand why Bobby's sats continue to be low. His conclusion is that Bobby's Down Syndrome is getting in the way of his recovery from the heart surgery because Ds frequently results in the lungs being compromised in some way. So, with some short term oxygen help and more time to recover, the hope is things will improve.
While we might like more clarity, the fact is, its good that Bobby does not have any of the usual complications of this surgery. If his pulmonary pressures were high (the most logical explanation for low saturations), he'd potentially be sprouting collateral veins for the next couple of years. If the Glenn shunt wasn't well constructed, it would mean an extra open heart surgery this week. Because Bobby's low saturations have no clear cause, we have ample room to believe that the situation may resolve itself in a matter of weeks. Its just a challenge for Bobby's computer programmer and market researcher mamas to trade a clear diagnosis for blind faith.
Bobby needs to be weaned off high flow cannula before we can go home. Unlike a regular cannula, the high flow sends some positive pressure into his lungs, giving them a little extra oomph on the inhale. But, the weaning won't start in earnest until Bobby's virus/infection is better. The poor thing has been laying on a bed of ice packs today to keep cool and is much more comfortable than he was last night. Valerie and I just sit and wait.
In my opinion, the hardest part about hospital life is that, most of the time, it's mind numbingly boring and the boredom is only broken by moments of extreme stress while baby boy gets extubated or his sats fall into the 50s. We all have our ways of dealing with boredom - you may have noticed that I like to blog. Valerie spent her time yesterday doing the Hokey Pokey.
3/8/09
Up, Up & Away: Sats up, Fever up!
After a good night of oxygen saturations mostly in the 70's, Bobby woke up today having sweated through his bedsheets and with a fever of 101.5 F, in spite of doses of Tylenol every 4 hours. The doctors decided to run more tests, including RSV, flu and respiratory shell vial cultures. He tested negative for RSV (a huge relief and makes us feel like the monthly Synagis shots have paid off). However, we are now holed up in "isolation" until the results of the respiratory shell cultures, which will take several days to come back. What isolation means here at the PICU is that whenever someone enters Bobby's room, they have to don a bright yellow environmentally unfriendly/single use only isolation gown and mask, before entering, then dispose of it upon leaving the room. Needless to say, this can serve as a bit of a disincentive for our already motivationally challenged weekend nurse to come in and check on the Bubs when the alarms on the equipment go off (which they do about 100 times per day). Sigh.
As for the fever itself, it broke on its own in the afternoon. Bobby's been lethargic since yesterday (we'd thought yesterday it was due to the extubation). The doctors want to give Bobby some time to fight the infection on his own, without more drugs. This approach is fine by us, since he's had all sorts of antibiotics pumped into him since 2/19. He's sleeping now, so hopefully he'll be better able to regroup in the morning.
Mama A returns to work tomorrow, and is finally sleeping at home tonight. She went home at 11am, but started feeling the effects of Bobby withdrawal, so she came back for a few hours visit late afternoon. I'm up to bat for hospital duty tonight. Nanny Beth will be here bright and early tomorrow, and depending on how Bobby does overnight and what happens at morning rounds with the doctors, I may or may not work. We've learned to take things one day at a time in Bubsyville.
As for the fever itself, it broke on its own in the afternoon. Bobby's been lethargic since yesterday (we'd thought yesterday it was due to the extubation). The doctors want to give Bobby some time to fight the infection on his own, without more drugs. This approach is fine by us, since he's had all sorts of antibiotics pumped into him since 2/19. He's sleeping now, so hopefully he'll be better able to regroup in the morning.
Mama A returns to work tomorrow, and is finally sleeping at home tonight. She went home at 11am, but started feeling the effects of Bobby withdrawal, so she came back for a few hours visit late afternoon. I'm up to bat for hospital duty tonight. Nanny Beth will be here bright and early tomorrow, and depending on how Bobby does overnight and what happens at morning rounds with the doctors, I may or may not work. We've learned to take things one day at a time in Bubsyville.
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