| Later updates | Aaron update 144 |
| Subject: Aaron update 144 Date: Tuesday, May 25, 2004 1:30 AM From: Kevin Quick To: Aaron Update List Aaron's been on the new medications for a month now, and he's still not gaining any weight to speak of (he's now 13.75 pounds; Robin is 12.25 pounds), and he's still throwing up quite regularly, so we're back in San Francisco for another 3 days of tests. This morning, we met with Dr. Perr, Aaron's gastroenterologist. This afternoon, we began a 20-hour reflux test, and tonight we'll monitor Aaron's blood oxygenation as he sleeps, to make sure it doesn't dip at night. It's now 11:30 p.m., and it looks like Aaron's finally falling asleep. He's been so wound up today, with all the hustle and bustle, having a reflux probe inserted through his nose into his esophagus, having blood drawn twice, etc. (His hands have socks taped onto them now, too, so he can't easily grab the pH tube and pull it out of his nose.) And he still has to be hooked up to four more sensors tonight for the sleep oxygenation test. Tomorrow, we'll do a stomach emptying test, to see whether Aaron's stomach emptying has sped up at all since the previous test was done last August. Wednesday, he'll be tested for developmental progress at the Whitney Clinic, then he'll have a lung function test, to make sure his lungs are working OK. At this point, it looks like our medical insurance will be expiring on Wednesday; that's another reason why we're cramming these tests in this week. (I just deleted a paragraph here; I thought it might be inappropriate to spell everything out to everyone. Let's just say that we're extremely thankful that MediCal, SSI and CCS were there for us when we needed them. Please pray with us that we'll be able to continue to provide whatever care and medications Aaron may genuinely need from here on out. At this point, that seems like an impossible financial task for us, but then, we're beginning to learn, I think, that God enjoys "impossible" challenges.) We'll be meeting with a social worker tomorrow, to make sure we've exhausted all possible state-sponsored resources. (We checked with our insurance agent again today and apparently there's still no possibility that Kathleen's, Robin's and my carrier, Blue Shield, nor any other private carrier, for that matter, will take Aaron on, given his preexisting conditions.) I took the attached picture this evening. No, Aaron's not listening to a CD player; he's wearing a pH meter on his back. Daddy engineered this "backpack" for him, after spending a few minutes following Aaron around, trying to keep him in close proximity to the meter, and from tangling up the cord. The prospect of following him around for another 10 hours or so, as most people apparently do, didn't seem to me to be the way to do it. Hence the "backpack." OK, now it's 12:30, and the respiratory therapist just finished doing his thing, hooking Aaron up to a bunch more wires, without waking him up. I think I'll send this update now, so I can get some sleep, too. We've got another couple of busy days ahead! Love, Kevin 12:35: Aaron just woke up and pulled his nasal flow sensor off. The respiratory therapist came in and disconnected all the sensors. 12:45: We took Aaron's crib out of the room; he'll sleep with Kathleen on a fold-out recliner. Once he gets back to sleep, we'll hook the sensors up again... 1:30: OK, he's hooked up again. Time for some sleep! |
  |