Surgery #5

I am sorry I have failed to give you an update on Payson, there are a million and one excuses as to why I haven't. So, the on the eve of a big surgery I am going to give a quick update:

Back in October when Payson was last in the OR, where all three of his new doctors were able to view his airway and esophagus at depth, we found out that Payson would have to have one more surgery before we were able to get rid of the trach. This information wasn't hard to hear, but brought Todd and I an ahha moment. When they scoped Paysons upper airway, (which had never been done) they realized that Payson had developed a form of scar tissue that blocked a majority of his airway. This skin was very difficult to see past, just a tiny opening, but beyond that they were very positive with his airway. As rare as Payson is they informed us he was on the less side of rare spectrum that they'd seen. Comforting...sort of! So, after tomorrow Payson's breathing should be so much easier. After tomorrow a lot more air will go around his trach allowing him to be louder and clearer allowing us to hear his real voice, (or so we hope). After tomorrow we are just a few steps away for having the trach removed for good. But in order to finish this chapter Payson has to endure another painful surgery. They will have to cut open his neck/revise his stoma, which means anyone who tries to get near his trach he will Kung Fu fight them. Needless to say we will be in the hospital for a couple days with a sedated boy. Yet, once we pass through recovery they will be able to begin to cap the trach essentially close it off without removing it. This will force him to breath normally and get him ready for the removal. If he gets sick and has a hard time we will have the trach as a back up. So, we move forward...

We are supposed to be at CHOP tomorrow at 8:30 meaning his surgery won't start until 9:30-10. Please pray that Payson's anxiety is minimal, the surgeon hands are just an extension of Gods, that recovery be easy and fast, we return home in just a few short days and that as parents we be the best advocate for Payson that he could have.

We will keep you posted!