May 27

I finally talked to Will's ENT today. She told me that they really don't know the extent of the weakness in his entire trachea. She said that it may just be the negative pressure created by him working so hard to breathe that causes the upper airway to close up some. It may be the reason that he's still requiring CPAP to keep his airway open. Either way, it's not really affecting his condition or prognosis. What isn't so great is the severity of the tracheal malacia where the vascular ring was. The airway is narrow and really floppy in that spot. They initially thought that he would outgrow this, but now it's looking like it's really too weak for him to outgrow it within a couple of years. He may outgrow it, but it will take a lot longer than we initially thought. That is discouraging, but we did some encouraging news. The cardio-thorassic surgeon had come to the conclusion that surgery was probably not going to be a good option for Will. However, after reviewing his latest bronchial scopes and evaluating his condition, he thinks he might have a surgical solution for Will. It basically means he will rebuild the damaged part of his airway. If it works, he'll be able to keep his airway open and won't require the trach or anything. He's too small for the surgery right now, but with a few months' growth, he should be ready. It's major surgery, and if we thought he would outgrow this on his own we wouldn't consider it. But at this point it's looking like his only option. The doctor thinks without the surgery he will have the trach most of his childhood or possibly all of his life. When the time comes we'll have to see if the ENT, pulmonologist and cardio-thorassic surgeon are all in agreement that this is the best course of action for Will. If they are then I guess we'll have to trust their decision and go for it. At this point we're just praying that the surgery will be a viable option and that it will solve the problem so Will can get on with a normal life. Say your prayers that the answer will be clear to us when the time comes.
Hays is doing great. He went to the doctor today and he weighs 5 lb. 9 oz. He's healing beautifully from his surgery and the doctor says he looks great. He's growing well and we don't have to back to the doctor for a whole month. Thank goodness!