Example: I took him to a birthday party that was at a gymnastics center. Every two minutes, Sam would sit, absolutely winded, and have to take a break. It was obvious he could not run as fast, as far, or do any large gross motor task with as much skill as his classmates. His teacher has been reporting to me that Sam needs more rest breaks, and gets tired even just playing inside the classroom.
At home, it is easy for us to modify our behavior and routine to fit Sam's energy levels. We don't take long walks without a stroller/ride on toy. When we walk into stores we walk S L O W, and then he rides in the basket. When he plays with our neighbors, he tends to hang back anyway since most of the kids are older and way faster. We carry him up the stairs even, or go super slow. But at school, they can't just slow down all the kids to keep up with him. They can't limit speed or intensity for the whole group just for him.
So the results of this most recent cardio visit did not surprise us: Based on Sam's oxygenation levels, which have steadily dropped over the last few cardio visits and are now down to 78%-80%, and on the reports of his increasing fatigue, we are getting close to having to make a decision regarding scheduling Sam's next heart surgery, the Fontan. Dr. Cardis wants to do this procedure BEFORE another medical crash like last time. He would also like to do it in the spring or summer of the year, giving Sam plenty of time OUTSIDE of cold and flu season to recover.
We were originally told Sam would need the Fontan at age two. Then, because of his wonderful health and a new school of research and thinking with regards to Hypoplastic Right Hearts, we were told Sam could be as old as 8 or 9 when he needs the Fontan. The problem is, that would mean severe activity restriction and 24/7 supplemental oxygen. Neither of those are (in our opinion) really appropriate. And, regardless of supplemental oxygen, if Sam starts to get oxygenation readings around 75%, it's time for surgery. Unfortunately for Sam, he is a tall, healthy kid. His size is contributing to his gradually decreasing oxygenation numbers. Meaning he has outgrown his original procedure and will need the Fontan sooner anyway.
Given all this, it appears that the spring/summer of 2013 may be most optimal for performing this procedure before Sam starts hitting even lower oxygenation numbers (which would make the procedure an emergency vs a controlled procedure). It would be outside of cold and flu season. It would also help bring up his energy levels before pre-K starts in August of 2013. Our plan for pre-K is for Sam to start at Springdale Elementary (our districted public school which is super high rated and all our neighbors love). I had wanted to schedule this surgery before Kindergarten anyway...it breaks my heart to think of him being so young and having to sit out of PE or recess or field day WITHOUT the surgery.
This is a tough decision either way. In theory, the longer we put off the Fontan, the longer we give Sam before he will need a transplant. And at the same time, Sam nearly DIED due to medically crashing waiting on his first open heart surgery. I fear waiting too long on this surgery, and causing another emergent situation. We also have to find a balance of allowing for limited endurance pre-surgery to buy 'life' time in the long term, vs letting him LIVE life NOW and experience all the things other kids his age get to experience. Dr. Cardis made it clear to us that Sam will likely NEVER be able to 'keep up' with his classmates. Best case scenario, his oxygenation levels will only rise to 90% after this surgery, which is still abnormally low and will cause poor endurance levels.
But I feel like we have to give him every opportunity we can to LIVE, and not just be ALIVE. If we are coming close to the Fontan based on medical cues we are seeing, then I would rather schedule the surgery for optimal recovery and optimal timing with regards to both cold and flu season and the start of pre-K, than open the door for a possible medical crash or decreased quality of life for Sam.
We return to the cardiologist in December, where we will have to make the final decision. Assuming the decision is made to go ahead with the Fontan in 2013, Sam will likely be scheduled for a pre-surgery heart cath (his third cath in his brief life) for the beginning of Spring, and surgery for the beginning of Summer.
I have dreaded this surgery for a number of reasons. For one...it's OPEN HEART SURGERY. Who WANTS to send their kid in to that. But the biggest reason is because no matter the outcome, this surgery is only 'palliative'. There is no 'curative' surgery for Sam. All they can do is perform a few procedures to make him more comfortable and increase his quality of life. And, unfortunately, the Fontan is the last foreseeable palliative procedure for his defect. When it fails, which it eventually will, the only option (that currently exists anyway) is transplant. Our great great hope is that Sam is solidly into adulthood when transplant becomes his next option, and that modern medicine continues to progress to allow a better option for him than transplant.
We have to be grateful for the amazing health of Sam thus far, and have faith that he will continue to be a 'best case scenario' with regards to his defect and outcomes. We also have to have faith that we are making the best decision for him that we can, and NOT LOOK BACK. Please pray for us in this process, and for Sam for understanding and patience. I look forward to 2013, and getting past this whole process and moving forward with our growing family into all the joys of pre-K and beyond.
