Sunday Dec 14th 4pm
I've been prone to bouts of exaggeration from time to time and I must admit that the title of today's blog finds me guilty once again. While the prospect of one of my little heroes being readmitted to the hospital genuinely feels like a death sentence it would probably be more apropos to liken it to being punched in the gut over and over again while simultaneously being forced to listen to country music......extremely depressing, painful and unpleasant. While the term "execution" is subject to interpretation, the verb "stay' is completely relevant and the subject of this blog. Yes, we have received a stay in the re admittance of Tyler to the hospital. Everything was all set for him today at noon. The hospital had called to confirm and his new residence in the Elephant room was all set. Well it didn't happen. It still may, but for now he is still sleeping comfortable in Casa de Thompson. The last forty eight hours have been interesting. Along with being guilty of the occasional exaggeration, Heather and I both share a certain degree of OCD.....or maybe we're just anal retentive.....however you diagnose us, the fact is that ever since the boys have come home we have been logging a lot of things. Maybe it is a disease we caught in the NICU. Watching the nurses weigh every diaper, measure every feed etc. has worn off on us. Among other things, every feed they have taken since being home has been carefully measured out and logged appropriately. It has been excruciatingly tedious to measure every cc of food before and after each feed. Daily feeds totalled and logged on a separate sheet to track their day to day process. Why? Well, we need to track each days caloric intake to make sure they are meeting their minimums......make sure they are gaining weight......they don't have any "gas in the tank" and thus if they don't gain appropriately then they go back on the feeding tube......blah blah blah......you know the drill by now. Anyway, in the midst of the depression of knowing Ty was headed back to the fifth floor of UC Davis Med Center, we began analyzing everything in an attempt to figure out if we could have possibly done anything different. In analyzing his daily feeds over the past four weeks a pattern developed.....now's the point when you can all scream "what a math geek!!!!!" you'd be justified :):)..... Well, we noticed that on days that both of us were home the entire day his feeds were higher than on those days that Heather had to do most of the days work on her own while I was at work. Heather's been doing a fantastic job, but we came to conclusion that two special needs children are extremely difficult to juggle. When I would get home from work and send Heather to get some sleep, I would get a taste of it myself. You'd be feeding one while the other is fussing and waiting to be fed. You'd wind up unable to put in the amount of time necessary to "coax" a full feed out of them. They take the first part of the feed, get immediate pain from the acid reflux, then immediately shut down and begin fighting against taking any more. You have to sit there with them for quite some time (sometimes up to an hour) to work with them on taking more. This process has to happen every 2 and 1/2 hours for each boy. That breaks down and doesn't happen when your getting tag teamed by both of them. Friday I took the day off and guess what? Friday's and Saturday's feeds went up. Imagine that. When there are two full time caretakers in the household we can keep our head just above water. Thus the proposal. This morning I called our Pediatrician, who happened to be on call, and told him Ty's feeds were up over the last two days. I relayed my theory to him on two full time parents being home. Being a teacher has some huge benefits. I get two weeks off for winter break after this week. If I take this week off, I will have three solid weeks of being able to be at home with the family. This should be enough to convince the docs to let Ty stay home......at least for now. Doc was working in Carmichael and agreed that if I brought Ty in to weigh him to verify weight gain, that we would hold off on the feeding tube. I went in and verified that Ty had indeed gained enough weight to put operation "stay of execution" into play. Of course we need to go in again on Tuesday to weigh again. Weigh ins will probably continue on a regular basis, but for now he's home. Our hope is that in the next three weeks, we can get him strong enough, that his reflux will develop enough and that we can establish some consistency in feeding that he will not find himself in the exact same situation when I go back to work in January. Who knows. We could have very well have just delayed the inevitable. Right now it's day to day......and today he is home!!!!