A long night's journey

Baby Luke has been having some health problems. I would say mysterious because no one seems to know exactly what it is but I think that word connotes something pleasant -- and this is not. Can we just say the scary unknown? It started a month ago with him waking in the night, arching his back, and screaming bloody murder. I called the 24-hour UTMB nursing number and waited for a call back. By the time it came, he was calmer and even smiling. So I just considered the episode a fluke.

Forward to a few weeks ago when it happened again. The screaming lasts anywhere from 20 to 40 minutes. Nothing I do helps. I've had suggestions to use massage, foot reflexology, warm baths, you name it. Nothing helps him. All I can do is keep him from hurting himself while he thrashes about.

We went to see his pediatrician but had to see another doc in the practice. She suggested cutting out all dairy in case it was an allergy. So we did. Do you have any idea how difficult it can be to teach daycare workers that dairy can take many forms? "All we gave him was the cheese goldfish. No dairy, see?" Then, even off the dairy and on soymilk, he continues to have the episodes. This doc also said he may be having night terrors. But I look that up in my little ole' DSM-IV to find that he does not meet the criteria for that. It happens in REM sleep, lasts more than the 10 minutes, and he is responsive to stimuli.

Back to the doctor (his, this time). I'm told he may be having Reflux again. Or it could be Intermittent Intususseption (spelling?). If it's reflux, these handy dandy prevacid tablets will work. If not, and it's the long thing, he may need surgery to correct his intestines "telescoping" into one another. If it's not corrected in time, he could lose part of his intestines or get an infection and die. I was voting for the reflux here. So onto the prevacid last Friday. And lo and behold, no painful episodes for Friday, Saturday, or Sunday. I even call his doc and leave a message that the prevacid did the trick!

About 2 hours later, after the doc has closed, we have another episode while he's playing. He suddenly falls to the floor, screaming, tears running down his face, and he's arching his back so far I'm worried about an injury. I decide to take him to the hospital. We go to one of the nearby hospitals and find it is full to the brim with folks. Do you know people actually bring in take-out and have like picnics in there? Yuk! After an hour, with no triage, I asked how much longer. Luke was feeling fine then and hard to keep away from the weird chicken eating people. The receptionist/nurse asked, "what was he here for again?" So I left. I figured I'd be better off at home and how likely was it that he'd have another episode before Tuesday?

Right. I had just put him to bed and took some meds myself. I've been sick all weekend and running about 102 fever. I'm just about to lay down when it starts again. Since someone had suggested I actually film what he looks like doing this, I did. I could not stand seeing him crying and watching me filming him. What a terrible idea. So we jump into clothes and back to a hospital but not the same one. This time I take him to the other local hospital. A better one. You may ask why I didn't take him there to begin with. But then you may not know that my daughter died in that hospital. So I took him there and just did what I had to do. We were triaged in pretty good time there. I think we arrived about 10:30, were triaged by 11:15 and then...well then we waited. We were taken back into the exam room at 2:00 a.m. He had an X-Ray of his tummy. We waited. At about 4:00 a.m., after another episode of pain, we were finally seen. It may have helped our case that I carried his screaming body into the nurses' station asking how much longer. The doc says there is some obstruction and he thinks there may be constipation in spite of the several diarrhea diapers he's had over the past two days. Something about having both? So we got an Rx for pain meds and suppositories. He also said that since their hospital is not really equipped for pediatrics, we'd be better off going into UTMB if we need more tests. And that's what I had been thinking. He also said that UTMB radiologists literally wrote the textbook that pediatric radiologists all over the country use.

So I guess that may be our next step. I have to call the pediatrician and get further instructions.

I kept telling myself last night that since one of my children has died, surely I wouldn't lose another one. And if I were at the same hospital, wouldn't that remind the cosmic forces or something? Except I really don't believe it works like that. All I know is that I have to take the best care of this little guy that I can. Enjoy every minute of his life I get to spend with him. And pray for the best.