July 31, 2008: Still Cute after the Feeding Tube
Haley’s feeding tube, otherwise known as a G-tube (not to be mistaken for an N-tube), is in. There were no complications so far as the actual incision or apparuts goes. I’ve already operated it last night, and so long as I keep the line clean, and infection-free (no small task), all should go smoothly. It’s not a button-lke protrusion I was expecting. The tube actually goes several inches outside her body. in couple of months, the doctors shorten it, so it will stand less of a chance to be pulled on or out by its two year-old. the rube will be plugged up throughout the day; at night, she gets attached to the pump, where extra calories are given to help her grow. I’ve taken some pictures, and will post them soon. I’m going to try to see if there is a noticeable difference week to week. So far, she’s quite put-off by the intrusion, and keeps waving at it saying, “all done, bye bye, see you tomorrow,” which is definitely better than pulling at it. There is an inflated balloon on the other side of ther stomach wall to keep her from actually yanking out the tube entirely, but that doesn’t stop her from trying. for the next little bit, the job is to train her not to touch it. Hopefully soon, she’ll learn to ignore it entirely.
Even though this was routine procedure, nothing ever goes like clockwork. And the caregiver still always has to be on top of everything (without be overbearing). For example, becuase she was the youngest on the list that morning, Haley was slated to go first. That also means she’s not allowed to eat 8 hours prior, or drink 4 hours prior to the operation. But there were two emergencies that came through, so her regular room was occupied. Instead of moving her to another room, they just pushed her back, so instead of her getting priority, we watched two hours go by before she was admitted, as watched kids much older than her get in line. I finally asked if she can just be rescheduled for another room (since it wasn’t the doctor we were waiting for), and they agreed. In the meantime, they should have told us the holdup and let her drink at least, so she wouldn’t dehydrate. Which she did. In fact, for five hours straight after the srugery, for the first time ever in her life, she begged for something to drink. I asked the nurse if we can do something about it; her response was no. I finally got a hold of the doctor, who gave her a “shot” of liquid through her IV. I won’t go into other things, but one night, after her IV came out, I asked the nurse why she hadn’t gotten her pain medication. the nurse informed me that she wasn’t due for more until midnight, which couldn’t be since the last dose given was in the early afternoon. It turns out that she was looking at an old order form, which called for stronger medicine given less frequently. I asked for the doctor, who straightened it all out. While the nurses here are adequate, they are little more than button-pushers who don’t think for themselves and the usual response is simply to push back. This is a far cry from the bone marrow transplant nursing staff that listened to everything you said, knowing that you are not there to be a bug, but rather an important part of the patient’s medical team.
The bright note were the doctors, who were all wonderful, residents included. And of course, heartful hematologist, who was in the hospital at the time, came by just to say hi.
The biggest bright note was Haley, as always, who entertained the floor nurses with her rendition of Annie’s, “Tomorrow.”
Stay tuned for the results from the allergy test. And for all those who have suggested it, so far, it is no siliac disease.
