| Later updates | Aaron update 143 |
| Subject: Aaron update 143 Date: Thursday, April 15, 2004 11:10 PM From: Kevin Quick To: Aaron Update List We just got back this evening from a two-day trip to San Francisco. My brain's a little tired, but I thought I'd try to organize my thoughts a little before going to bed. OK... Yesterday, we met with Dr. Perr, a gastroenterologist. This was our first visit with Dr. Perr, and we were able to meet with her in Santa Rosa, which his halfway between Kelseyville and San Francisco. We liked Dr. Perr a lot, but unfortunately, there was some kind of miscommunication, and we were only scheduled for a 15-minute check-up. Dr. Perr was kind enough to actually spend 45 minutes with us, then another 15 minutes during her lunch hour. We had 10,000 questions for her, and not enough time to cover everything. We'll schedule for a full hour-long visit next time. Dr. Perr has worked with many, many preemies, at several large hospitals, even quite a few very early preemies, and she assured us that Aaron's eating, digestion and growth challenges are fairly common for someone born as early as he was. She has had a lot of experience with other very early preemies, and we felt that if anyone could help us help Aaron to grow, she could. She prescribed two more medications for Aaron, along with the continuation of the Reglan. The first one is Zantac, which is an antacid, which she said is normally prescribed along with Reglan. If Aaron is having some discomfort with excess stomach acid or reflux, the Zantac should help this. The second one is milk of magnesia, which will help loosen things up on the output end of things; this should help keep his system less-full and less backed-up. In a month, we'll be getting back together with Dr. Perr (in San Francisco this time, together with Lonnie Wong, the nutritionist) to evaluate how well these two added medications are doing. We stayed overnight in San Francisco; Kathleen took the attached picture then. We called James' parents Kerry and George, to see how 25-weeker James has been doing. James was Aaron's next-isolette neighbor in the NICU last winter. Apparently, James is still having his challenges. As we mentioned a couple of months ago in an update, James had had a g-tube installed in August (Kerry said that the doctors told her that if they didn't put in the tube, James would not survive), which got infected. James then had to be hospitalized and be put back on the ventilator. He's home again now, and is on supplemental oxygen at night. He has hearing problems which are affecting his speech (or babbling noises) development, so he'll be fitted for a hearing aid eventually. He weighs 19 pounds now, thanks probably to all the good nutrition that he's receiving through the g-tube. (Aaron is still hovering around 13.25 pounds, by the way.) This morning, we met with the CCS team: pulmonologist, nutritionist, physical therapist, nurse practitioner and social worker. We had been looking forward to meeting pulmonologist Dr. Wynn, but he was out on an emergency call, so we had a substitute pulmonologist, Dr. Ofreneo. She was quite thorough, and ordered a couple of tests. We had Aaron's lungs x-rayed this afternoon, and Aaron will be having a nighttime blood oxygenation test performed in a month, during our next (probably 3-day) visit to San Francisco. This test will determine whether Aaron's blood oxygenation dips at night. If it does, he may need to go on supplemental oxygen at night. Dr. Ofreneo was concerned, as we are, that Aaron is still not gaining weight, and continues to drop away from the normal and VLBW (very low birth weight) growth curves. She had already consulted with the gastroenterologist Dr. Perr, and everyone has agreed that we'll give the Reglan + Zantac and milk of magnesia a month to do their things, then we'll do our nighttime blood oxygenation tests, and go from there. The pulmonologist said that Aaron's lungs will grow their fastest during the first three years of his life, and will continue growing at a pretty good rate until he's about 8 years old. So, we want to do everything we can to encourage and safeguard his lung growth especially during his first three years. We asked Dr. Ofreneo about the possibility of our returning to church (actually, that was one of the major questions that we wanted to have answered on this trip), and unfortunately, she advised against it for probably the next year. She said that very early preemies should remain relatively quarantined for the first two years of their lives, and after that, things should be evaluated on a case-per-case basis. Exposing Aaron to cold and flu germs, especially in an enclosed environment such as a church service, would be especially risky now for Aaron, she said, because of his very low weight. If he were to catch a bug now, she said, that could easily set Aaron back several months (not to mention the risk of potentially fatal RSV or pneumonia), and we really can't afford for that to happen. Our church is having a special baby dedication service a week from Sunday, and we were looking forward to being there. We have several sets of friends who will be publicly dedicating their new babies to the Lord at that service, and we were really hoping to be part of that service, and were looking forward to introducing Aaron and Robin to our church family then. We were planning to resume weekly church attendance and "normal life" immediately thereafter, but alas, it doesn't look like that's going to happen. Kathleen and I thought about just attending the dedication service, but we can't imagine doing that while remaining aloof and untouchable; we would feel as though we were being stand-offish and rude. On the way home today, Kathleen joked that maybe next year our church could have a special toddler dedication service! At any rate, all disappointments aside, we've decided that we have to put Aaron's best interests ahead of our own desires. The nutritionist gave us some ideas on what kinds of high-calorie foods to feed Aaron, and how much of them Aaron needs to eat (for 127 calories per kg of body weight now, for catch-up growth, rather than our previous goal of 120 cal/kg; OK, now let's set the bar a little higher than our previous unattainable goal!). However, we already have a pretty good feel for what he needs to eat and how much; what we really need to know is how to get him to eat it! Our best month so far was 115 calories per kg of body weight, and we've dropped off a little from there. Aaron eats as much as we can stuff into him, and a little bit more (and he often gives back to us that "little bit more"). The social worker asked us about our insurance situation, which has been OK so far. Our CCS coverage has been extended a couple of times for three months at a time, and is still in effect. However, we received a cessation notice from CCS a couple of weeks ago. So, on April 26th, we'll be meeting with two doctors in Sacramento who will determine whether Aaron's (and our) case is dire enough that his CCS coverage will continue. We're hoping that this coverage does continue, because Kathleen's, Robin's and my carrier has already denied coverage for Aaron because of his preexisting conditions. So, that's where we are. As Dr. Perr said, "In years to come, you'll look back on this, and in light of your full-sized Aaron, the difficult parts of these first few years of his life will be only a distant memory." In the meantime, we just treasure our two little ones. I could write a whole book about Aaron's antics: his contagious smile, the funny noises that he and Daddy love to make together, his fascination with how everything works, his total wonder at the world around him. And his sister Robin is just the sweetest, cutest little thing; she's already got Daddy wrapped around her little finger, too. But, I've probably worn you out enough, and it's about time for us to get some sleep. God bless you, and thank you all for your love and prayers. Kevin, Kathleen, Aaron and Robin |
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