Payson's latest

Here is part of the email I wrote to my community group leaders filling them in. I figured instead of repeating myself I'd post what I wrote for an update.

Today, Payson had a two studies done. One was to see how well his stomach emptied and the other was to x-ray his airway. The “official” results won’t be in until tomorrow morning, but here is what I observed. His gastro. test, (stomach emptying), is supposed to reveal acid reflux and from what I could tell he didn’t have much if any at all. Yet, this is one of the tests that no one gave me immediate feedback, but if what I observed is correct it is a good thing the reflux is minimal. The next test was to view his trachea. Within a few seconds of taking x-rays I heard the radiologist say, “that is really narrow”. Apparently, Payson’s trachea is narrow further up than where his repair site is, (we expect a little narrowing at the repair site, so it is baffling to why this narrowing is up further). The radiologist then said that this narrowing is called trachealmalasia. This means he has a floppy windpipe that will collapse if he cries or coughs. It will cause him to aspirate on his food more often and the common cold can easily land him in the hospital. Bingo, now we have a direction, but what now? Well, they will need to get the official results which will be in tomorrow morning, but they are going to have to run a few more tests, CT scan, MRI, etc. to nail this down. He did have a virus, but this condition has made it 100% worse than it is.
As I was leaving this afternoon, Payson, performed an all time blue episode. It was one of the most traumatic ones I have seen just because he got stiff as a board and had little eye response. Most blue episodes he is able to keep eye contact as if to say help me and he remains limber, but this one wasn’t like any I’d seen before. After a few seconds I went into the hallway to ask for help while the nurse stuck with Payson. After a few minutes he got his color back, his numbers rose and he was limber. Within minutes of this episode he was smiling at me! The Pediatrician had come in to help with Payson and I took the opportunity to pry for answers to this condition. I told her what the radiologist told me and asked how we will treat this. She said she’d have to get the official results and run more tests, but kids with this condition more than likely have to have a tracheotomy. It isn’t permanent, but will be there until he grows out of this weakness, (which is usually by 24 months). With that my heart sank…
This hospital stay has been difficult because we are in a whole new area. We don’t have any of the same staff, doctors, social workers or housekeepers, which I had gotten to know well over our stay. So, when I see my surgeon he must think I am goofy b/c I light up! I am so happy to see a familiar face and one that has been a part of Payson’s care from day 1. It is also nice to have someone we know will give us answers. Not that he is the end all be all, but right now he is until we can build a repore with the pediatricians in the PICU.
My hopes for a Christmas at home with all the kids is slowly fading away. When we first arrived on Monday we thought we’d be out by the weekend, but it is proving otherwise. At this point we aren’t sure what direction we are going in, but we do know this isn’t a quick stay and we might be facing another surgery. Talk about disheartening! We hope that tomorrow morning we will have the official results back and a plan put in place, but it isn’t just the Pediatrician and surgeon anymore. We have to have the pulmonologist, ENT, surgeon and pediatrician all be on the same page…this is going to be like finding a needle in a haystack.