Cautiously Optimistic

I hate to even think like this. I mean, it goes against everything I’ve learned so far in our nearly SIX WEEK STAY at this hospital.

But… I’m really starting to feel kinda hopeful.

Jack had a bronchial scope on Wednesday to look at his airway. I was terrified this would end in the worst possible outcome: he would need a tracheotomy (when they put a shunt in his airway and he would have a tube coming out of his throat). His main doctor, as well as the pulmonologist (or, “the lung guy,” as he calls himself– he has an uncanny resemblance to John Slattery), assured me that probably wouldn’t be the case.

Yeah, no one mentioned the possibility of a permanent feeding tube when they did his swallow study, either. They were all, “Oh, if he’s aspirating, we can just thicken his feeds and everything will be hunky dory!”


So, needless to say, my hands were wringing as they came to tell us the results. But, THANK YOU, UNIVERSE, he actually needs no medical intervention for his airway.

Now, that doesn’t mean there isn’t a small complication in there. Would it really be Jackson if there wasn’t something wrong? The smooth muscle at the back of his airway is slightly bowed, making it just a tad more difficult for air to pass through. But, since his oxygen level is top notch, and his breathing isn’t labored, they believe this is something he will grow out of as his body matures.

His lungs are healing from whatever hell they went through while he was on the ventilator from surgery. His breaths have come down from the 90s to the 70s. His reflux (cross your fingers) seems to have gone away. His G-button and hernia surgery sites have healed well, and feeding him through his tube isn’t so bad.

Could it be… are we on the path to head home, soon?

DON’T DIRECTLY THINK ABOUT IT. It’s quite skittish.

2 thoughts on “Cautiously Optimistic

  1. Thomas Miller says:

    We just went through that.

    My wife and our baby John spent a little less than a month in the hospital in May. My wife and I have a lot of information on our blog,

    You can send her an email if you need any survival tips:

    She should have a blog update tonight as we had a follow-up appointment on Wednesday.
    His genetics doctor thinks he may have Catel-Manzke syndrome, a skeletal problem.


    • Rachel Engel says:

      He has VACTERL Association, just something that means his anomalies are commonly seen together. They were concerned he had a chromosome deletion (I wanna say it was 22q11.2? Could be wrong) because it also covered a lot of his conditions, but thankfully his microarray chromosome check came back normal.

      This extended stay in the hospital is killer. My husband and I do 24 hour shifts so we can both see our 2-year-old daughter. We’ve been here six weeks, and have at least two more.

      Feel free to browse back, I have a lot more of his medical info, and a lot of… my venting. This has been my outlet.

      I’ll keep following John, and thinking about him!


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