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.
11/24/09
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.
Subscribe to:
Posts (Atom)
Posts
