Hello everyone-
I am sorry it has been so long since I posted an update on Aaron. The past couple of days have been very hectic, as we were released from the hospital around 6 p.m. yesterday. We were surprised to be released, but are glad to be away from the hospital environment.
This morning all of us moved (in two trips via tiny Ford Focus) back to the Camden RMH and we are settled back in over here now. We will remain here in the local area as we wait on our next visit and echo at CHOP.
The surgical conference on Tuesday did not yield a firm plan for Aaron’s surgery. The doctors are still concerned about Aaron’s mitral valve. While it appears to be functioning properly, its construction seems abnormal. They are concerned that he has an ‘arcade’ mitral valve. If so, they will not be able to do the two-sided repair surgery originally discussed. This would be the most preferable option b/c it would be one surgery that would allow Aaron use of both sides of his heart. If his mitral valve will not sustain his heart, they will have to close off one ventricle of his heart through a set of two surgeries called Norwood procedures. The first surgery is done preferably b/t 3-6 months of age, with the second surgery being done b/t 2-3 years of age. This is the less desirable of the two options at this point.
Right now, the plan is to remain here until our follow-up echo on 3/12. If all looks good, they will release us home to MS. They want Aaron to have a heart catheterization b/t 4-6 weeks of age, either here or in MS, so they can get a better idea of his heart’s function (the function of the mitral valve, particularly) at that point. We feel like they will formulate a more firm plan for surgery after the heart cath.
We are a little discouraged b/c of the uncertainty of everything. Thankfully, Aaron seems to be doing well and is adjusting to life away from the CCU. As his mom, it’s hard to look at this precious, perfect-looking child and know that his heart is broken inside. It is also hard to watch him eat and breathe and to see that he is laboring harder than he should sometimes. I wish I could take it all on for him, but I know I cannot. Please pray that God will give us strength to wait on His timing and His perfect plan for Aaron. We love you each and every one.
The Prayer Link 