Tuesday, April 24, 2012

New Equipment Galore

Following a fun and busy weekend with friends, we shot up to the farm Sunday for an evening of rest before Collin's quarterly NACD evaluation Monday morning. Bob liked what he saw with Collin and was very understanding when I shared that I've been feeling a bit overwhelmed by the scope of Collin's program recently. His solution was to focus on Collin's walking and crawling during the week. This will involve lots of use of his new TAOS, which we will be picking up next week, and of a new slide with hand and foot holes that he will use to push/pull himself forward. On the weekends, we will put aside the rest of his program and focus primarily on Collin's face and mouth, with the goal of making some more marked improvement in his awareness and use of both. I feel really good about this new direction and am ready to get going!

After our NACD meeting, we squeezed in a visit with a wonderful respiratory therapist in northern Kentucky who helped us work through some issues we've been having with Collin's BiPap. Namely, that he isn't using it. We got the machine last year after our sleep study at Cincinnati Children's, and though Collin did fine with just the mask on his face, he seemed scared to death when the machine was actually on. We tried a few things and then finally shelved the idea for a while and reverted to using his nightly quarter liter of oxygen. But then when we recently got a pulse ox for our house and started analyzing the data we collected with it, we found that Collin's central sleep apnea is still causing him to have desats at night. They are fewer and less severe than without the oxygen, but it was enough to motivate us to get serious about BiPap, which would (theoretically) eliminate any apnic spells since it uses pressure to give a breath when needed. The therapist had found the first BiPAP mask designed specifically for pediatrics and with a short trial, we could tell a HUGE difference in Collin's tolerance of the whole experience. After a short scuffle with insurance, we took our awesome new mask and headed home.

On the way, Collin's voice started to sound hoarse. We assumed that the BiPap trial had irritated his vocal cords, but as he grew increasingly agitated and even started crying (a rarity for C), we realized something was going on. He started getting junky before bedtime and by this morning was already struggling to breathe through the congestion in his chest. He was a sick boy and getting sicker quickly. We got in with our (amazing!) pediatrician by 10am and left 45 minutes later with prescriptions for steroids, antibiotics, and breathing treatments. What had started out (yesterday!) as an upper respiratory infection had already turned into a bronchial infection and was causing airway constriction that made Collin wheeze and work too hard to breathe. This kind of reaction is fairly common in children under five years old because of their immature respiratory systems, but the severity and the necessity for aggressive treatment were because of Collin's low muscle tone, which makes his airway floppier and prevents him from clearing it as well as other kids because he can't cough easily. He is also at much higher risk for pneumonia, which is the reason for the antibiotics. The first breathing treatment was a loud one (Collin screaming and crying while I tried to sing "Old MacDonald" over him), but the second was better and he is already sounding a little less distressed.

So we've had an eventful couple of days around here. We've canceled everything for the rest of the week to allow time for healing for Collin and to hopefully keep Mama rested enough to avoid getting this nasty bug.

If I can get myself together (and that's a big "if," people), I'll post some pictures with his cute little fish-decorated breathing treatment mask on.

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