Wednesday, March 30, 2011
Glenn-iversary
Today is Sam's second Glenn-iversary. Two years ago, after a sudden medical crash where he nearly died, Sam went through a successful Bidirectional Glenn surgery at CHOA-Egleston in Atlanta. It was at the same time some of the worst and best moments of our lives together as a family. We went from rock bottom to new life. Sam has started pointing to his scar recently. He doesn't get it at all. He looks at it like he looks at his belly button or his toes...it's just a body part. But some day I hope he will look at it and feel proud and empowered by what he has gone through. I remember taking photos of Sam without his shirt on before his surgery (before he got really sick) because I thought I would be so sad when I looked at his little scarred chest...I wanted to remember him 'pure'. But I love his scars. They mean life and hope, and remind me what the power of prayer and love can accomplish. Love you baby Sam!
Friday, March 18, 2011
Oh Collaterals...
We have seen the Cardiologist at LEAST every 3 months since Sam's first open heart surgery 2 years ago. We have been truly bless by 'good news' appointments. It was only a matter of time before something turned. We'll discuss the findings in a minute. First, let's discuss the laughable disaster that was our visit to the Cardio today...
Sam and I talked about going to the doctor all the way to the office. He was perfectly happy when we got there, and smiled at everyone. He charmed the nurse into turning on the big screen in the waiting room (we were the first people there today), and played with their 2 foot tall toy clock - probably the highlight of his day. Chris met us there and Sam and Daddy played in the waiting room while I signed a few papers. Another little boy came in. He had clearly just had surgery, based on how stiff he was moving and how his parents were holding him (you can't pick them up under the arms for 6 weeks after surgery). But Sam got the little boy to play and it wasn't long before the boy was looking much more 'loose' and comfortable laughing with Sam. Finally the nurse called us back. At the same moment, the fire alarm went off.
We all evacuated to the parking garage - Sam, the little boy, the nurses, the doctors...everyone. We were all standing in a circle talking about how this was their second alarm in 2 weeks. One of the nurses tried to point out a police car to Sam, and Daddy picked up Sam to help him see. Suddenly, I noticed a little wet spot showing up on Daddy shirt...apparently Sam's diaper got shifted and Sam got so excited about the police car, he peed all over Daddy. We walked to the car for a clothing change (for Sam, not poor Daddy), and Sam walked the whole way like he had something terribly uncomfortable in his pants...the doctors and nurses couldn't help but laugh.
Naturally when we returned to the building after the alarm, Sam was pissed...he thought he had gotten out without having to see the doctor. He cried through his EKG, BP read, and pulse ox read. His pulse ox was 84%. I was a little disappointed, since our most recent home readings were at 90%. Remember, they want him in mid 80s, and dropping lower would mean surgery time. So in my idiot mind, 90 is close enough to mid 80 to still be pretty damn good. Anyway, Sam was a good boy for his Echo. Luckily I had packed foot loops, and he ate them and watched Dora on the tv in the echo room while the lady took 30 minutes worth of photos.
The results were not bad, but not good. Sam has collateral vessels forming from his aortic arch heading towards his lungs (Aortopulmonary Collaterals...APCs). They are forming because our bodies are smart. His body knows he has low blood oxygen levels. So, it thinks it will fix it by building a secondary pathway for blood to get to the lungs to pick up some extra oxygen. Sounds good. But it's not. I mean, if there was no other surgical procedure, then we would be thanking his body for giving it a good try. But what initially starts off as a route to increase blood oxygen levels, eventually leads to blood flooding the lungs. It also increases the work load on the heart, which receives a then increased return of blood from the lungs. For a little heart already working double duty, this can quickly lead to heart failure.
The first signs of collateral vessels are increased blood oxygen levels and increased fatigue with activity. Both of which we have seen. I was so proud of those 90% readings a few weeks ago, but they may be a sign that some collateral vessels have already grown enough to reach the lungs. We had written off his seeming increase in fatigue with activity to the cold weather, frequent cold/ cough illnesses, and just a pure increase in chances to be active. But this may be a sign of the increased work load on his heart. Maybe. We don't know. The only way to know for sure is to do a heart cath.
Currently, the echo can only detect the start of the collaterals. They get to small to tell if they ACTUALLY have already reached his lungs, and they can also come from parts of the Aorta that can't be imaged by echo. Since Sam's EKG, BP, and today's oxygen readings were around his normal, the doctor doesn't think the problem is too wide spread. He wants to wait to see any changes over the next 3-6 months, and it sounds like that's the way it will be until it is decided that something needs to be done. If we can hold off the cath until the cath he gets as part of his pre-Fontan surgery work up, that would be ideal. We'll see. Collateral vessels are common and almost expected in Glenn and Fontan patients, but I was hoping we could hold them off a little longer.
So it's not total devastating news, but it's just not the best news ever. We got to pretend for the last 2 years that things were 'normal'...ish. Trust me, it never leaves my mind what Sam will deal with in his life. Now I can't stop thinking about freakin' collaterals and what they might mean or do. BLAH. I still feel like we are just about the most healthy Tricuspid Atresia/HRHS kid we know...we know plenty of kids with the same diagnosis who have extra diagnoses/conditions/problems on top of that which have caused any number of complications. It makes me bitter to have to add a complication to our list.
Sam and I talked about going to the doctor all the way to the office. He was perfectly happy when we got there, and smiled at everyone. He charmed the nurse into turning on the big screen in the waiting room (we were the first people there today), and played with their 2 foot tall toy clock - probably the highlight of his day. Chris met us there and Sam and Daddy played in the waiting room while I signed a few papers. Another little boy came in. He had clearly just had surgery, based on how stiff he was moving and how his parents were holding him (you can't pick them up under the arms for 6 weeks after surgery). But Sam got the little boy to play and it wasn't long before the boy was looking much more 'loose' and comfortable laughing with Sam. Finally the nurse called us back. At the same moment, the fire alarm went off.
We all evacuated to the parking garage - Sam, the little boy, the nurses, the doctors...everyone. We were all standing in a circle talking about how this was their second alarm in 2 weeks. One of the nurses tried to point out a police car to Sam, and Daddy picked up Sam to help him see. Suddenly, I noticed a little wet spot showing up on Daddy shirt...apparently Sam's diaper got shifted and Sam got so excited about the police car, he peed all over Daddy. We walked to the car for a clothing change (for Sam, not poor Daddy), and Sam walked the whole way like he had something terribly uncomfortable in his pants...the doctors and nurses couldn't help but laugh.
Naturally when we returned to the building after the alarm, Sam was pissed...he thought he had gotten out without having to see the doctor. He cried through his EKG, BP read, and pulse ox read. His pulse ox was 84%. I was a little disappointed, since our most recent home readings were at 90%. Remember, they want him in mid 80s, and dropping lower would mean surgery time. So in my idiot mind, 90 is close enough to mid 80 to still be pretty damn good. Anyway, Sam was a good boy for his Echo. Luckily I had packed foot loops, and he ate them and watched Dora on the tv in the echo room while the lady took 30 minutes worth of photos.
The results were not bad, but not good. Sam has collateral vessels forming from his aortic arch heading towards his lungs (Aortopulmonary Collaterals...APCs). They are forming because our bodies are smart. His body knows he has low blood oxygen levels. So, it thinks it will fix it by building a secondary pathway for blood to get to the lungs to pick up some extra oxygen. Sounds good. But it's not. I mean, if there was no other surgical procedure, then we would be thanking his body for giving it a good try. But what initially starts off as a route to increase blood oxygen levels, eventually leads to blood flooding the lungs. It also increases the work load on the heart, which receives a then increased return of blood from the lungs. For a little heart already working double duty, this can quickly lead to heart failure.
The first signs of collateral vessels are increased blood oxygen levels and increased fatigue with activity. Both of which we have seen. I was so proud of those 90% readings a few weeks ago, but they may be a sign that some collateral vessels have already grown enough to reach the lungs. We had written off his seeming increase in fatigue with activity to the cold weather, frequent cold/ cough illnesses, and just a pure increase in chances to be active. But this may be a sign of the increased work load on his heart. Maybe. We don't know. The only way to know for sure is to do a heart cath.
Currently, the echo can only detect the start of the collaterals. They get to small to tell if they ACTUALLY have already reached his lungs, and they can also come from parts of the Aorta that can't be imaged by echo. Since Sam's EKG, BP, and today's oxygen readings were around his normal, the doctor doesn't think the problem is too wide spread. He wants to wait to see any changes over the next 3-6 months, and it sounds like that's the way it will be until it is decided that something needs to be done. If we can hold off the cath until the cath he gets as part of his pre-Fontan surgery work up, that would be ideal. We'll see. Collateral vessels are common and almost expected in Glenn and Fontan patients, but I was hoping we could hold them off a little longer.
So it's not total devastating news, but it's just not the best news ever. We got to pretend for the last 2 years that things were 'normal'...ish. Trust me, it never leaves my mind what Sam will deal with in his life. Now I can't stop thinking about freakin' collaterals and what they might mean or do. BLAH. I still feel like we are just about the most healthy Tricuspid Atresia/HRHS kid we know...we know plenty of kids with the same diagnosis who have extra diagnoses/conditions/problems on top of that which have caused any number of complications. It makes me bitter to have to add a complication to our list.
I kept Sam home with me today (today is my one day off from work during the week, usually reserved for cleaning the house and errands). I wanted to hold him a little tighter today. We went shopping for new clothes for him, new toys for him, and got a cupcake from a fancy bakery in town for him. He enjoyed it all, and enjoyed bossing Mommy around all day, too. I tried to take a photo of him in his new clothes (and his new hair cut from yesterday), but he wasn't having anything to do with the camera today. You'll have to live off of an older photo (from about a week ago...). I love him.
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