| Later updates | Aaron update 145 |
| Subject: Aaron update 145 Date: Wednesday, May 26, 2004 12:52 AM From: Kevin Quick To: Aaron Update List Long night and day. Aaron tossed, turned and did alligator rolls all night. He finally managed to pull out his pH probe around 6:30 a.m., but we did get enough good data for a complete reflux test. We don't have the detailed results yet, but at first glance, it doesn't look like Aaron has a major reflux problem. He had one big acidic spike early in the evening, but we think that was because I had given him a pretty big piece of pineapple (which he threw up a half hour later, but the spike came before the throw-up). We had a stomach emptying test today (the one that uses the radioactive isotope), but we don't know the official results yet. To me, from what I saw on the monitor, it looked as though Aaron's stomach emptying is still slow; it looked to me as though half of his stomach contents emptied in an hour or maybe a little more. (Normal would be 1/2 hour.) We'll have to await official interpretation of the data, though, before coming to any definitive conclusions on that. The results of this test will determine whether Aaron continues on Reglan. Dr. Hardy (our pulmonologist, who sometimes isn't as encouraging to us as some of the other doctors) said that the data from the sleep study was incomplete, because Aaron tossed and turned so much, and the sensors gave some troubling readings, like desats down to 70 percent. If these are in fact accurate readings, Aaron has a problem with his breathing and blood oxygenation, and he'll have to be on oxygen again, at least at night. But the troubling readings may be due to sensor errors, too. So, we're re-doing the test tonight. We're now back in the PICU (pediatric intensive care unit) for another night. I just got Aaron to sleep, two hours after his normal bedtime. After taking a mild sedative, Aaron did laps on some carpeted stairs (see the attached photo), among other things, to try to wind down. This trip has really wound him up. He's been way overstimulated with all the goings on, and he's now developed a definite fear of doctors, who have poked him with needles and forcibly restrained him just too many times in the past two days. It's sad for us to witness Aaron's innocent trust in strangers evaporating before our eyes, being replaced by the expectation that they are going to pin him down and hurt him. The nurses have been doing their best, though, to assure him that not all strangers are going to hurt him; Aaron has had his charming moments with many of the nurses. Well, Aaron just woke up. So, we'll be wrestling with him again for a good part of the night, I'm afraid. Then, early tomorrow morning, Aaron will be evaluated across town at the Whitney Clinic, then we'll return to the PICU for his lung function test. Dr. Hardy has recommend full IV sedation for the lung function test, so we're a little nervous about that. We met with our social worker this afternoon, and unfortunately, the insurance situation is looking pretty bleak. Our income is too high (above poverty level) to continue with SSI, and we have too many assets (over $3,000) to qualify for Medi-Cal. CCS has given us written notice that they will be canceling us tomorrow, but we will probably try to appeal the decision, especially if Dr. Hardy says that Aaron needs to be on supplemental oxygen. There's a chance that if Aaron's medical bills are projected to be over 20% of our income (actually, my guess is that these three days of tests alone will cost over $20,000), we may be able to have a successful appeal. But, we think that CCS may still be dependent upon Medi-Cal's approval, in which case we'll be denied because we have more than $3,000 in assets. It's complicated, but we'll be ferreting out any crack that we can find, if we need to. Unfortunately, our social worker told us that we're in the perfectly wrong situation financially: we make too much money for welfare and other low-cost programs, and we're self-employed, which means Aaron can be denied by our current insurance company because of his preexisting conditions, whereas he wouldn't be able to be legally denied if we worked for a company that had a group plan (we have an individual plan with Blue Shield). Our social worker asked us to seriously consider liquidating all of our assets, and paying medical bills with them, until we have less than $3,000 left (including retirement accounts and life insurance policies), at which point we will qualify for Medi-Cal again. However, we then wouldn't have enough capital to keep our machinery business going. Some fun things to think about. OK, I'm really tired. Aaron has fallen asleep on Kathleen's lap, and Kathleen has fallen asleep, too. So, time to get Aaron back in bed, and hooked up again... Love, Kevin 12:10: Aaron just woke up with a scream, with a half-installed nasal cannula hanging off his face. The nurse and respiratory therapist are having trouble consoling Aaron, so... OK... I don't want to describe what it's like for me pinning Aaron down with two other people, as he screams in fear, while we do our best to re-tape his cannula to his face, so he can't pull it off with his mitted hands. With my eyes full of tears, I have trouble seeing the tape, so I let the nurse do it, while I help pin Aaron down. 12:30: Kathleen is consoling him now, but he's very upset and afraid. He's been screaming now for about 20 minutes. Now Kathleen's crying. Time for another family hug. 12:45: We just gave Aaron some Benedryl (sp.?), to help calm him down. Kathleen asks, "I wonder how much of this his little body can take? |
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