The Children's Experience

Micah had his 11th set of ear tubes put in today. The doctor wanted a scope done to see if he could determine what the cause of Micah's sleep apnea is, and since our local doc didn't feel exactly comfortable doing that, we had it done at Children's since that was the ENT that ordered the scope anyway. (Yes, the boy has two ENT doctors. He's special that way.) We were told when they scheduled it that they wanted to keep him overnight for observation after the scope, so we packed accordingly.

We have a long history with Children's Hospital. Micah had several sets of tubes put in there as well as other random surgeries, but most have been at Old Children's. Pittsburgh built a brand new facility for the hospital and we had just one set of tubes installed there before we said, "dude, that is the worst location ever. We're switching to our local hospital." And we did.

In the several years we've been at the local hospital getting Ear Tube Sets I Can't Even Remember installed in our boy, Children's Hospital has come a very long way. In fact, despite the craptacular location, we seriously discussed having tubes put in there every time from now until the end of time because Children's knows what they're doing.

First of all, they listened to the parents. Other places pretend to, and some have done a half good job of it, but today was awesome. They have someone who's sole job is to poll us as the parents and ask what it would take to make our child more comfortable. No wrist band? You got it. No hospital gown? Done. He doesn't like when we wear our parent stickers? Don't put them on. And as simple as that seems, other hospitals have insisted that we follow The Almighty Protocol, and it just adds to the boy's stress. Today, Micah went into surgery wearing his own street clothes. Including his beloved Crocs. THEY DIDN'T EVEN TAKE HIS SHOES OFF. How's that for comfort?

And the play rooms. There are play rooms everywhere. In the registration area, in the pre-op waiting area, in the recovery area... These play rooms have far more in them than a few magnetic trucks in a sandbox and a spiral knob on the wall. We're talking kitchen sets, super hero figurines, Guitar Hero and Wii, books, computers, board games, tractors, dolls... Pretty much anything a kid could think of to play with is there. And for the first time in more than an even dozen surgeries, he was actually relaxed at one point before they took him back to the operating room. And then? I was allowed to go back with him and hold his hand and count with him as he was put to sleep.

Afterward, they listened to us, as parents, when we said, "he won't eat or drink anything as long as he's here." And they believed us. Once he was awake, they took his vitals, declared him healthy, and allowed him to leave. That was the quickest in and out we've ever had, and it was pretty amazing.

Micah winked as he saluted the nursing staff as a thank you/goodbye. He, too, was impressed.

So the results of the scope? Yeh. His tongue base really is enlarged and there is surgery to reduce it. As far as I'm concerned, that'll never be an option. EVER. When a doc says it's incredibly painful and doesn't always fix the problem, it's not something I'm signing my kid up for. And our boy also has an additional growth in behind his nose at the ear connection place. (Sticking with me through all the technical talk?) That extra growth isn't adenoids, although he does have some of those growing back. (He's an overachiever, that kid is.) (And those adenoids aren't contributing at all to the sleep apnea, so we'll just ignore them.) That growth behind his nose at the ear connection place kind of obstructs some breathing, and also makes him retain fluid in his ears. WE HAVE FOUND THE CULPRIT OF THE ENDLESS NEED FOR EAR TUBES. This is good, but not good at all. This kind of means that he may never outgrow the need for tubes. I kind of want to cry over that.

So the next step is to see if he'll tolerate a C-Pap machine. After being in the OR with him, and seeing him fight that mask, that just solidifies in my mind that it'll take a looooonnnnngggg time (if ever) for him to acclimate to that. But one has to try something, right? Plus it'll get the doc off my back if I say, "tried that. I'm done."

Hilarious conversation of the day:

The doc said, "I put in the long term tubes this time."

"He always gets those. They last about 4 months." The look on the doc's face was one of disbelief. "Well, maybe these will last 5 months." Because I needed to remind him that I really know my kid better than any doctor ever will, and this is not our first time at the rodeo. This, too, is reason to go back to Children's for the next set of tubes, which I estimate will be sometime next spring. I'm evil that way.

1 comment:

wendy said...

Isn't it wonderful when you finally find doctors that actually listen to us ( the parents!!) Sorry he has to keep getting tubes put in, but at least they worked you him and you so that it would be a less stressful experience for him.