Are We There Yet?

Kazoo Lips and Puppy Dog Hat. (Because, why not?)

William is generally doing okay, and Mom and Dad are learning all the little details of how to care for a trach (dressing cares, tie changes, trach changes, etc.) His lungs are still pretty junky, and he has a lot to clear out, so he's taking a little longer than expected to get completely off the vent (though really, he's just on CPAP, which means that while technically still on a vent, he isn't really needing the full support a vent provides). So he's making progress, but isn't cooperating as much as we would like. His demeanor has been pretty much normal, though, and he's providing plenty of entertainment (as demonstrated in picture).

And who else isn't cooperating as much as we would like? If you answer "John-Raven," give yourself a high five! Last Friday, he began having a little respiratory trouble. It didn't seem to be much of a problem until Saturday when he began really dropping his sats and running a fever. Sunday came, and he wasn't any better. We even had to briefly raise his oxygen to four liters just to keep his sats close to 90. Thankfully, that didn't last long, but it was enough to signal that he needed to be looked at more closely. One trip to Cook Children's Emergency later, and we had some answers: an x-ray showed the start of some pneumonia in one of his lungs, his white blood count was slightly elevated (though not actually in the "high" range), and his lactic acid was just barely outside of the normal range. All of which indicated that we were at the front end of Random Annoying Sickness, so we went home and continued to treat him with steroids and antibiotics and pulmonary treatments and other things of the hit-him-with-everything-and-hope-this-works variety. He's already much better, so with any luck, he'll be fully recovered soon. Just in time for summer break. 

William's Busy Week

William has had a busy week since our last post. On Monday the 9th, the docs decided to scope his airway, mainly because he is considered to have a "critical airway" (that is, highly constricted and difficult to intubate), which had put him at much greater risk during his emergency on the previous Thursday (May 5) and his re-intubation on Friday (May 6).

For the uninitiated: Anytime someone requires intubation, it's because they can't properly breathe on their own, but if you can't get a tube into their airway, well...that's a problem. ('Cuz, ya know, that whole breathing thing is kinda important.)

So the scope was done to see just how bad his airway was, and what we learned was what we had been afraid of: To keep him safe, he needed a tracheotomy.

William = Trachtastic!

So the bad news was that William needed a trach. The good news is that, hey, he can get a trach and that will make him a ton safer in the future. Difficult as it was to accept this new thing, we recognize that the good definitely outweighs the bad here.

The surgery was performed on Wednesday (the 11th). Everything went well, and a couple of days later, the doctors were able to remove him from the vent and he was switched to a trach collar for supplemental oxygen so that he could breathe on his own.

Earlier today, he had his first trach change, which is a bit of a milestone because it means that he is no longer considered a critical airway due to now having an artificial airway that provides quick access for a vent in the case of respiratory difficulties. The ENT surgeon confirmed that the site itself looks good. So...success!

(There was a little hitch, though, as during the trach change process, some mucus plugs shifted around and gummed up his lungs a bit, requiring that he be put back on the vent temporarily, but that doesn't appear to be a cause of great concern.)

All in all, things are (mostly) going according to plan and within the next day or so, William should be moving out of PICU and to the regular floor where we will begin learning how to manage and care for the trach.

So once again, it's time to adapt to a new normal, but in the long run William will be safer, and that's what matters.

How do you laugh with a vent tube in your throat?

Like this: 

It's hard to tell, of course, but he really is full of the giggles (in the pics above and below). Part of that is the result of a visit from a certain sibling: 

William's x-ray this morning showed improvement in both lungs, with increased aeration in the left (which had collapsed Friday night). So overall, making progress. 

Happy Mother's Day to all the amazing moms out there! 

William's Status

I guess having a birthday wasn't enough for William -- he wanted some extra attention this week. 

For those who don't know, William had an emergency on Thursday and had to be rushed from school to the hospital. The initial cause of his problem is still uncertain but our understanding is, at school, he began experiencing minor respiratory difficulties that suddenly escalated to severe. EMS was called to the school, they took him to Arlington Memorial (which is basically across the street from the school), and from there he was transferred to Cook Children's PICU, where he is now. He was intubated on Thursday and then extubated Friday morning. Unfortunately, he had to be reintubated Friday evening when his left lung collapsed. This morning, the left lung is already looking better. At this point, William is stable, and it's just a matter of letting his lungs rest and giving him treatments for a couple of days before determining when to take him back off the vent again. 

We will update you when we can as things progress. 

Thanks. 

The Cobb Quad Turns Seven

That's right, folks, the boys are seven today.

And it's a great day to be outside and for Mom to read "Happy Birthday to You" by Dr. Seuss.