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A Plan, A Plan! -- Originally Published January 12, 2008

Friday, July 30, 2010

A lot has happened since our last posting. It's hard to know where to begin.

On Thursday, we went to see Dr. Pulmonologist. He took a look at Michael's palate, asked a lot of questions, and pronounced himself, "very pleased" at Michael's condition and progress. The next step is working toward decannulation. (Decannulation = getting the trach tube out.) Yep. That's right. We have a plan. It's a fuzzy one, and a lot depends on Michael, but we have a plan.

Basically, we go back to see Dr. Pulm in March, and we have to see the pediatric ENT. We already had one scope of Alex's airway (remember the tiny camera that attacked Michael and Big Bird the day of his trach upsize? That was it.) Nothing abnormal appeared on that test, so what is left is for a bronchoscopy at the hospital, and a 24-48 hour hospital stay to observe Michael's breathing when his trach is plugged. Then, if all goes well (O2 levels stay up, CO2 levels stay down), the tube comes out. But, in order to get to those two tests done, two things have to happen. First, RSV season needs to end because they don't want to put Michael into the hospital with a bunch of really sick and contagious kids (like the ones in the PICU right now). Second, Michael needs to show Dr. Pulm that he can tolerate having his trach capped, by using his Passy-Muir valve (aka speaking and swallowing valve). The current goal is to have Michael in the hospital sometime in April.

Right now, Michael is not tolerant of the valve at all, although he no longer gets mad when we come near him with it. It's a tough thing to learn -- breathe in through your trach, and out through your mouth. A lot of things have to go right, including conscious thought and sufficient airway. Michael can already do quite a bit of babbling when he really tries, so the airway should be sufficient. Now the question is how do we get this kid on the valve? Well, any way we can, I suppose.

If things don't work well with the valve, we may have some other options. It is often the case that kids get smaller trachs as part of the weaning process, but with Michael's copious secretions, a smaller trach seems like a bad idea all around, everyone thinks.

As you know, a trach is a tube stuck in an airway, so for a kid to breath *anyway* with that thing in the way, is a tough job. He actually has to work harder than any of us would without the tube, in order to get the tube taken out. This is not an easy thing we are asking him to do, but we really think he will find a way.

Also, we are cleared to take Michael on vacation at the end of February. (Las Vegas, here we come!!!!!!!!) The doc had no objection ... if you can believe it! It's going to be a blast to actually be able to do something that feels a little like a normal family. (Or as normal as you can get with two medical bags, a feeding tube, and a handicapped parking sticker.) With Michael's luck (both the good luck kind and his tendency to have super-rare syndromes and super-rare surgical complications to trach tube surgery) we should have him play a slot machine or too. We could win mighty big....

As far as feeding -- Michael is doing a fabulous job with baby foods. He loves green beans, sweet peas, and squash. He even asked for more peas at dinner tonight. He hates thickened formula, though, no matter how thick it is. when you spoon it in. Super-thick formula mixed with squash -- that's okay by spoon. Squash watered down and put in a bottle -- that's ... sort of ... maybe ... possibly ... okay if it has to be ... if you don't pay attention to the temper tantrum. But, it's temper, not fear like it is with the formula. He managed about an ounce today by bottle ... with a lot of struggle. Tomorrow we try squash watered down with formula. Then we go to the store, because we are out of squash!

And, we are out of space! Until next time ... us three.


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