We had a tough night here at Children's Memorial. Bubs' oxygen levels kept dropping below acceptable levels. He's been on supplemental oxygen since yesterday evening and that didn't seem to help. After an early morning chest x-ray his doctors discovered that part of his right lung is collapsed - a not uncommon result of being intubated.
As we're learning, a lung collapse is serioius, but not emergent. The collapse keeps him from taking big breaths and thus compromises his oxygen levels. The treatment is some therapy - pounding a disc on the colllapsed area of his lungs in order to open up the air sacs, and lots and lots of oxygen help.
Right now, Bobby's on a special oxygen machine that's one step away from a breathing tube. He hasn't eaten yet and won't eat until he's started breathing on his own - certainly not today but maybe tomorrow. He's on a combination of morphine and ativan to help keep him comfortable. One side effect of all the oxygen is that he has swallowed a bunch of air - his stomach is rock hard from his inflated intestines. When he's awake, he's in extreme pain from trying to pass the gas.
But he's hanging in, as is Bobby's way. The nursing care here is great - so far he's had his own nurse for the entire stay. There are intensive care doctors, respiratory therapists, nurse practioners, cardiologists and surgeons following his case. He's needed the attention.
We're still unraveling the differing doctor's opinions. It seems the different parties are settling on a 3 month timetable for surgery, but that, of course, can always change. In fact, I wouldn't be surprised if it changed by the time I write the next update.
7/23/08
7/22/08
Bobby's Surgery Update
Bobby is fine - resting in the ICU and battling to have his breathing tube removed. Hopefully that will happen later today.
However, Bobby's heart is still not fixed. After opening him up and performing some additional tests, the doctors decided that his left ventricle is to small for the planned repair. They instead put a band around Bobby's pulmonary artery. The band lessens the symptoms of congestive heart failure and buys time for Plan B to be figured out.
But here's where it gets tricky. Our surgeon told us we would wait 6-9 months in the hopes that the ventricle would grow. At that point, we'd either decide to do the 2-ventricle repair or move to our second option - rerouting his blood flow so that blood from his body bypasses the heart and flows directly to the lungs.
Our cardiologist, the same heart doctor Bobby regularly sees, told us that the 2 ventricle repair was unlikely, because of the left ventricle and because he has a problem with his mitral valve. With the 2 ventricle repair off the table, we'd only wait 6-8 weeks for the second kind of surgery.
We're not happy. Obviously, we're not happy that Bobby still has a bum heart. We have no idea what to do in terms of Bobby's day care - do we come up with a 6 week or 6 month plan? We wonder how long we can hold off on his physical and developmental therapy and still hope that he can catch up. And we're simply angry that we're being told very different stories by our doctors. Our cardiologist promised to resolve this tomorrow so now we're in a holding pattern, waiting with Bobby, trying to feed him only the most positive energy.
The good news? Bobby is recovering nicely so far. He has an incision down the middle of his chest and a broken sternum. He'll hopefully be home by the weekend.
Better news? While not a fix, the pulmonary band will make Bobby feel better while we decide what comes next.
The best news? We still have options. While this was a very disappointing bump in the road, it's not the end of the world. The next surgery will come and we will have a healthier Bobby. It's just not today.
However, Bobby's heart is still not fixed. After opening him up and performing some additional tests, the doctors decided that his left ventricle is to small for the planned repair. They instead put a band around Bobby's pulmonary artery. The band lessens the symptoms of congestive heart failure and buys time for Plan B to be figured out.
But here's where it gets tricky. Our surgeon told us we would wait 6-9 months in the hopes that the ventricle would grow. At that point, we'd either decide to do the 2-ventricle repair or move to our second option - rerouting his blood flow so that blood from his body bypasses the heart and flows directly to the lungs.
Our cardiologist, the same heart doctor Bobby regularly sees, told us that the 2 ventricle repair was unlikely, because of the left ventricle and because he has a problem with his mitral valve. With the 2 ventricle repair off the table, we'd only wait 6-8 weeks for the second kind of surgery.
We're not happy. Obviously, we're not happy that Bobby still has a bum heart. We have no idea what to do in terms of Bobby's day care - do we come up with a 6 week or 6 month plan? We wonder how long we can hold off on his physical and developmental therapy and still hope that he can catch up. And we're simply angry that we're being told very different stories by our doctors. Our cardiologist promised to resolve this tomorrow so now we're in a holding pattern, waiting with Bobby, trying to feed him only the most positive energy.
The good news? Bobby is recovering nicely so far. He has an incision down the middle of his chest and a broken sternum. He'll hopefully be home by the weekend.
Better news? While not a fix, the pulmonary band will make Bobby feel better while we decide what comes next.
The best news? We still have options. While this was a very disappointing bump in the road, it's not the end of the world. The next surgery will come and we will have a healthier Bobby. It's just not today.
7/19/08
The Swayhawk Kid
We're in the home stretch now - only 3 more days until Bobby's surgery. Valerie says it feels surreal; I feel numb; Bobby is unconcerned. We take him in Monday for a long series of tests - blood work, echocardiogrm, etc. Tuesday morning we're back for early morning surgery.
We had another emergency room visit/hospital stay last week. Bobby's chest was congested so we went in for an xray and found that, sure enough, he had extra fluid on his lungs. One day and a couple of Lasix IVs later, he came home feeling much better.
Bobby is so much fun to be with. He's started baby talking a mile a minute (like his Mama V. :) and kicking up a storm during bath time. We've even taken him in to the big person bathtub a couple of times- something he loves. His spark is getting brighter every day.
Through these first months, the outward sign of this outgoing, funloving boy has been his mohawk. It started out as some hair sprouts on the top of his head and then extended front to back into a full hawk even a professional wrestler would be proud to call his own. Now its starting to bend to one side of his head. No longer a straight line, its organizing into a semi circle, still waving proudly in the wind. His mohawk has become a swayhawk.
That hair has grown over the course of 4 hospitalizations. When he stopped growing, stopped gaining weight, his hair got longer and stood up even straighter. That hair has helped defined his persona during these early months - to the nurses at the hospital he is Bobby with the mohawk. It draws people to him. It's the hawk that can't be stopped. And when I start to get scared about this Tuesday I think about that hair. It just seems to me that open heart surgery is nothing to the Swayhawk Kid.
We had another emergency room visit/hospital stay last week. Bobby's chest was congested so we went in for an xray and found that, sure enough, he had extra fluid on his lungs. One day and a couple of Lasix IVs later, he came home feeling much better.
Bobby is so much fun to be with. He's started baby talking a mile a minute (like his Mama V. :) and kicking up a storm during bath time. We've even taken him in to the big person bathtub a couple of times- something he loves. His spark is getting brighter every day.
Through these first months, the outward sign of this outgoing, funloving boy has been his mohawk. It started out as some hair sprouts on the top of his head and then extended front to back into a full hawk even a professional wrestler would be proud to call his own. Now its starting to bend to one side of his head. No longer a straight line, its organizing into a semi circle, still waving proudly in the wind. His mohawk has become a swayhawk.
That hair has grown over the course of 4 hospitalizations. When he stopped growing, stopped gaining weight, his hair got longer and stood up even straighter. That hair has helped defined his persona during these early months - to the nurses at the hospital he is Bobby with the mohawk. It draws people to him. It's the hawk that can't be stopped. And when I start to get scared about this Tuesday I think about that hair. It just seems to me that open heart surgery is nothing to the Swayhawk Kid.
7/1/08
July 22nd is Our New Surgery Date
We found out yesterday that Bobby will have his surgery on July 22nd. The doctors don't have any new concerns - our cardiologist just wasn't happy with the original July 31st date so she pushed for something earlier.
It's a little scary, for sure. July 31st seemed like forever and a day from now. July 22nd is 3 weeks from today.
In less scary news, Bubs has broken the 5 kilo mark, which was the weight our doctor was shooting for. That's 11 pounds, 3 oz for us non metric-ized folks. He also slept from 9 pm until 5:30 am this morning. That's just a little something for us.
Three weeks to go isn't very long, so I'd ask on his behalf that you send extra prayers and good energy his way. Today he is struggling with a 90 breath per minute pace. Four weeks from today, that should be cut in half.
It's a little scary, for sure. July 31st seemed like forever and a day from now. July 22nd is 3 weeks from today.
In less scary news, Bubs has broken the 5 kilo mark, which was the weight our doctor was shooting for. That's 11 pounds, 3 oz for us non metric-ized folks. He also slept from 9 pm until 5:30 am this morning. That's just a little something for us.
Three weeks to go isn't very long, so I'd ask on his behalf that you send extra prayers and good energy his way. Today he is struggling with a 90 breath per minute pace. Four weeks from today, that should be cut in half.
6/30/08
Bobby and the Technicolor Diaper
OK...it's getting harder to come up with good titles for these things.
It's been a quiet week here as we settle into a new routine of Valerie being back at work. We're very happy with Bobby's new care giver. She holds him for most of the day, which is really all he wants out of life. Synthia won me over when I asked her, "do you ever notice that Bobby looks a little smug when he cries and gets you to pick him up?"
"I sure do," she said. "Don't let them tell you that little brain ain't working; that little brain is working fine."
Yes, Bobby has us wrapped around his fingers. And, Bobby continues to grow. He's now a couple of ounces shy of eleven pounds, meaning I only have a week to come up with an alliteration to eleven that means handsome and robust around the waistline.
Not that Bobby is as big as the pictures might lead you to believe. Oh, his weight is outpacing his length for sure - that's what the feeding tube is designed to do. We need him to be as big as possible for the surgery so we keep him on a high calorie diet. An ounce of breast milk or baby formula is typically 20 calories. We add vegetable oil and extra powder to Bobby's meals so that he is eating at a 30 calorie per ounce clip. It's hard on him - he often gets too full and struggles to get through his meals, but it's a necessary evil for now.
With all of that, Bobby's weight is in the 5th percentile for typical children his age. He's not long enough to even show up on the growth charts. Part of this is likely due to his heart defect - his breathing takes an inordinate amount of energy which in turn takes energy away from other parts of his development. But, the reality is, Bobby is just going to be a little guy.
The average height of a Ds adult male is 5 feet 3 inches. In fact, the growth patterns for Ds kids are so different from typical children that they have their own set of charts. On the Ds chart Bobby is in the 50th percentile for weight and just above the 25th percentile for height. So, while the heart surgery may be stunting his growth a bit, we're not raising a center or a power forward.
Which doesn't matter. Any child of ours is going to want to run the team from the point anyway. Or maybe he won't like basketball at all. Maybe he'll be a third baseman, or a goalie or some ice hockey related position that he'll have to explain to me. That's for Bobby to figure out.
It's been a quiet week here as we settle into a new routine of Valerie being back at work. We're very happy with Bobby's new care giver. She holds him for most of the day, which is really all he wants out of life. Synthia won me over when I asked her, "do you ever notice that Bobby looks a little smug when he cries and gets you to pick him up?"
"I sure do," she said. "Don't let them tell you that little brain ain't working; that little brain is working fine."
Yes, Bobby has us wrapped around his fingers. And, Bobby continues to grow. He's now a couple of ounces shy of eleven pounds, meaning I only have a week to come up with an alliteration to eleven that means handsome and robust around the waistline.
Not that Bobby is as big as the pictures might lead you to believe. Oh, his weight is outpacing his length for sure - that's what the feeding tube is designed to do. We need him to be as big as possible for the surgery so we keep him on a high calorie diet. An ounce of breast milk or baby formula is typically 20 calories. We add vegetable oil and extra powder to Bobby's meals so that he is eating at a 30 calorie per ounce clip. It's hard on him - he often gets too full and struggles to get through his meals, but it's a necessary evil for now.
With all of that, Bobby's weight is in the 5th percentile for typical children his age. He's not long enough to even show up on the growth charts. Part of this is likely due to his heart defect - his breathing takes an inordinate amount of energy which in turn takes energy away from other parts of his development. But, the reality is, Bobby is just going to be a little guy.
The average height of a Ds adult male is 5 feet 3 inches. In fact, the growth patterns for Ds kids are so different from typical children that they have their own set of charts. On the Ds chart Bobby is in the 50th percentile for weight and just above the 25th percentile for height. So, while the heart surgery may be stunting his growth a bit, we're not raising a center or a power forward.
Which doesn't matter. Any child of ours is going to want to run the team from the point anyway. Or maybe he won't like basketball at all. Maybe he'll be a third baseman, or a goalie or some ice hockey related position that he'll have to explain to me. That's for Bobby to figure out.
6/22/08
Bobby's New Beginning
We finally have a surgery day to look forward to/worry about. Bobby's heart will be fixed on July 31st. He'll be one day shy of 17 weeks old.
In all honesty, we were hoping for a quicker date. His breathing is getting worse and he is often very uncomfortable. Plus, we just want to be able to move forward and focus on something new. That said, it's good news that the doctors believe he can wait another 6 weeks. We also have the chance to put another 2-3 pounds on him, which can only improve his chances of doing well.
Valerie goes back to work this Thursday. We're both anxious about leaving him - it's been so much easier for me to go to work knowing that Bobby was with Valerie. But, we have what we believe will be a wonderful option for Bobby. Synthia is a baby expert who has been taking care of kids longer than I've been alive. She's worked with special needs babies before, in fact she had one herself. When she holds Bobby he gazes at her as if to say 'Hi beautiful lady who knows what she's doing. Where the heck have you been?'
On the Bobby front, he's mostly about getting bigger and dealing with the heart problems. But he has also started an amazing new phase of baby talking. Valerie and I both talk to him non stop and he is rewarding us with a series of coos and one high pitched greeting that sounds like a drawn out 'hi', though maybe what's he's really saying is 'Can you mamas please stop talking so much? A boy needs his rest.' Who knows? It's all such a beautiful mystery.
In all honesty, we were hoping for a quicker date. His breathing is getting worse and he is often very uncomfortable. Plus, we just want to be able to move forward and focus on something new. That said, it's good news that the doctors believe he can wait another 6 weeks. We also have the chance to put another 2-3 pounds on him, which can only improve his chances of doing well.
Valerie goes back to work this Thursday. We're both anxious about leaving him - it's been so much easier for me to go to work knowing that Bobby was with Valerie. But, we have what we believe will be a wonderful option for Bobby. Synthia is a baby expert who has been taking care of kids longer than I've been alive. She's worked with special needs babies before, in fact she had one herself. When she holds Bobby he gazes at her as if to say 'Hi beautiful lady who knows what she's doing. Where the heck have you been?'
On the Bobby front, he's mostly about getting bigger and dealing with the heart problems. But he has also started an amazing new phase of baby talking. Valerie and I both talk to him non stop and he is rewarding us with a series of coos and one high pitched greeting that sounds like a drawn out 'hi', though maybe what's he's really saying is 'Can you mamas please stop talking so much? A boy needs his rest.' Who knows? It's all such a beautiful mystery.
6/14/08
Ten Pound Tubster
The big news in our house today is that Bobby now weighs over 10 pounds - quite an accomplishment for a baby who struggled to gain any weight just over a month ago. For now, most of the weight gain appears to be in his cheeks and tummy. We're hoping that eventually evens out.
This Wednesday we will find out the date for his heart surgery. After more consultations, it seems that our risk of having to do the more complicated repair is higher than we believed in the last entry. Still, complicated or no, it should work and should allow Bobby to have an active life.
He is definitely feeling the weight of his heart failure these days. He's sleeping less, needing comfort more. The first hot days of summer were very hard for him. That seems to have improved now that we've lowered the dosage on his diuretic, installed our air conditioners for the season, and bought him a bunch of cutie new summer clothes. Our 10 week baby wears a size newborn pant, is close to belly busting out of a 0-3 month shirt and needs a preemie sun hat. Again, we're hoping that eventually evens out.
Speaking of head sizes, our pediatrician mentioned at our 2 month visit that Bobby's head was growing slower than normal which might indicate a problem with brain development. Of course, that scared us both, led me to spend hours reading about microencephaly, and fed right into our fears that Bobby has one of the more severe cases of Ds, meaning slower development and less upside. At the next visit, we asked about this again and our pediatrician said 'Did I say that? I'm sorry. That measurement was an outlier." We love our pediatrician - she has been wonderfully involved in Bobby's care and is our most trusted resource. Yet at that moment, I wanted to scream. Just another lesson, I think, that we need to keep focused on the long run and not worry about the day to day bumps in the road.
This Wednesday we will find out the date for his heart surgery. After more consultations, it seems that our risk of having to do the more complicated repair is higher than we believed in the last entry. Still, complicated or no, it should work and should allow Bobby to have an active life.
He is definitely feeling the weight of his heart failure these days. He's sleeping less, needing comfort more. The first hot days of summer were very hard for him. That seems to have improved now that we've lowered the dosage on his diuretic, installed our air conditioners for the season, and bought him a bunch of cutie new summer clothes. Our 10 week baby wears a size newborn pant, is close to belly busting out of a 0-3 month shirt and needs a preemie sun hat. Again, we're hoping that eventually evens out.
Speaking of head sizes, our pediatrician mentioned at our 2 month visit that Bobby's head was growing slower than normal which might indicate a problem with brain development. Of course, that scared us both, led me to spend hours reading about microencephaly, and fed right into our fears that Bobby has one of the more severe cases of Ds, meaning slower development and less upside. At the next visit, we asked about this again and our pediatrician said 'Did I say that? I'm sorry. That measurement was an outlier." We love our pediatrician - she has been wonderfully involved in Bobby's care and is our most trusted resource. Yet at that moment, I wanted to scream. Just another lesson, I think, that we need to keep focused on the long run and not worry about the day to day bumps in the road.
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