Kingly News

I find it interesting how many of the doctors hesitate to tell us when we might go home for fear of “jinxing” it. Just goes to show how human nature trumps intellect. One doctor would hint but not say, specifically saying she feared jinxing it, and another actually covered Hannah’s ears when she said the possible days.

But another came right out and said it, so if we don’t go home, I guess it will be her fault. (If you can’t tell, I’m smiling as I write this.)

The best estimate we have right now is Sunday or Monday. If she stays until Tuesday (which we hope she doesn’t, of course), it will be exactly four weeks that Hannah has been in the hospital.

For the medically-minded: her diarrhea continues (this poor child has had diarrhea of some sort of close to two months, between antibiotic-induced effects, followed by c. dif., rotavirus, and possibly smooth bowel syndrome which she has to grow out of), but her electrolytes are in balance and she is gaining weight, indicating that she is pulling enough nutrition from her food, and she is not getting dehydrated. The frequency of stooling (as the medical staff politely calls it) has reduced, the first step in actually getting over it, so they feel she would be better off at home (away from the germs that always are around a hospital, since that’s where sick people congregate) since we have all the oxygen equipment and home health support to be able to continue to support her in recovery.

Janet and I are, of course, exhausted, but it could be (has been) so much worse on us. We’ll be glad to get back home and, maybe, start catching up on the rest of life, which has pretty much been put on hold for nearly a month.

Hannah has officially passed her old record. Today is day 17. Many of her issues have improved, but the devastating diarrhea continues, and they’re not completely sure why.

Her fevers, which had been so high and uncontrollable, have been staying at a respectable 99 degrees. Her respiratory is back to normal, which usually indicates that other things have gone back to normal also, but not in this case. She is still receiving treatment for C. Dif and for her last UTI. Actually, they had finished the run of antibiotics for the c. dif two days ago, but because the indications are that she still has it, they are starting a different drug to try to combat it.

We have, still, absolutely no idea when we might be going home.

This is weird. I was just certain I had posted about some of this, but it’s not here. I hope I didn’t delete some stuff from a backup or something.

Anyway.

You’ve seen in separate posts about Hannah’s latest hospitalization. This is some of what’s happening with the rest of us.

Barry is now working for U.S. Cellular—just finished his training, in fact, and he really likes his job, the people he works with, and the company he’s working for.

Amanda has broken up with her boyfriend. She and Barry are finalizing arrangements for them to share an apartment in Knoxville. So it will lead to changes in housing situations for a lot of us.

Caty had her tonsils and adenoids (at one time she told someone she was having her androids removed) taken out on Valentine’s Day. She sounds completely different to me now.

We had a birthday party for my mom on her 84th birthday. It really seemed to be a great surprise to her. We had all of the grandkids there, too. She got a combination VHS/DVD player, and now she’s trying to figure out how to work it.

I need to get back to the hospital, so more news later.

Just a quick update. Hannah is still in the hospital, and continues with her fever very high (it got up to 104.5 at one point), and it has remained high with very little break (got down to 99 at one point, but mostly has remained above 102 since Wednesday). My hopes for a quick hospitalization are fading, since she is now developing respiratory symptoms.

I don’t know what happened to this post; I swear I wrote it earlier, but it is not here now, so I’ll have to “re-create” it as best I can.

We haven’t done real well at keeping the blog updated, but the latest bit of news is that Hannah is back in the hospital. She threw up on Wednesday morning, and it was brown, and then her fever went to, I think, 103-something? To make a long story shorter, X-rays in the ER showed no evidence of intestinal blockage. Cultures later showed she has c-diff (if I’m saying that right), an organism that grows in when antibiotics have destroyed the “good” bacteria that normally help in digestion.

Hannah had just come off two consecutive rounds of antibiotic (first Suprax, and then amoxicillin) to treat two different bugs that were causing another urinary tract infection.

She is now getting something to kill the c-diff, and then we’ll have to help her grow back the normal digestive bacteria.

Her fevers have remained very high, once going as high as 104.5.

Maybe Barry will tell you a little more about this himself, but just to share a bit of news: he went to the endocrinologist in Knoxville for the first time yesterday, and really liked them. Very professional and very thorough, they were, and they talked straight with him but with humor, and without talking down to him—which is apparently really different from his experience with his former endocrinologist in Asheville.

The news was good and bad, depending on how you look at it. Read the rest of this entry »

Hannah continues to work on her head control, which in a lot of ways is better than it was. But she still obviously has issues. It can wind up giving her an interesting way of looking at the world, though.

Here Ms. Brooke and Hannah consider each other in a way that only Hannah can do. When she makes eye contact with you, there is no doubt that there is a lot of thinking going on in there. We hope to help her eventually tell us what it is.

Caty has been having a lot of her own health issues. She had her gall bladder removed in September, and was briefly in the hospital for dehydration in October because she hadn’t been able to keep anything down for a week or so. Today she went to the gastroenterologist, and they want to do some “scope” stuff to make sure she doesn’t have Crohn’s Disease. She is scheduled for that procedure on Dec. 14. She has missed a lot of school as a result of all this, about which we are concerned on several levels.

The most recent thing with Hannah: we had been unable to get the Scopolamine patches for Hannah because of a manufacturer’s backorder. Our Kroger Pharmacy (where the folks know Hannah very well, and work hard on our behalf) had called all over to try to find some of the patches. The pulmonologists switched her to hyoscyamine, which didn’t work nearly as well and required twice daily doses (the Scopoamine patch had to be changed every 48 hours).

But it looks like we’re in luck. They just called to tell us, in their words, “Hannah’s Scopolamine patches are finally in.” We’ll head out there in awhile to get them for her, and maybe she will be less snotty. She has been producing snot faster than Washington produces stupid regulations.

In other news….

Hannah set a record for hospital stay in late August. I have to look back at records to verify this (one of the consequences of not keeping the blog up at the time), but I have it recorded that she went in the hospital on Aug. 19 and was there until Sept. 3. She went in with respiratory symptoms, and it was another one of those times when it turned out to be another urinary tract infection. When she has problems, her whole body starts producing mucus—not pretty, I know, but the truth.

Although we got the UTI cleared up fairly quickly, the respiratory problems hung around, and we had to try lots of different things to get her well so she could go home. They had to do another brochoscopy (when they look down in her lungs and also clean them out), and that didn’t clear things up the way it has before. They even did another pH probe to see if she was having acid reflux again and perhaps aspirating the result, which would have kept her lungs irritated. Ultimately a combination of Pulmicort and Flovent reduced the inflammation in her lungs enough for us to go home.

Here’s another place where failure to keep up the blog tells on us now: we know Hannah made another trip to the emergency room sometime between that hospitalization and now. We think it was in late September or early October. We know it was a Friday night, for reasons that will become clear in a moment. But we can’t remember for sure when it was.

At this point, we can’t even remember what led us to take her to the ER. It’s heck getting old. In any case, we took her to the ER after she started having lots of snot again. It seems like the rest of us had had flu earlier in the week, so when the snot started we just took her on over to ER. In any case, they checked her for flu and found nothing; X-rayed her lungs to check for pneumonia and found little or nothing; found no indication of an infection through blood work; and pretty much scratched their heads. I remember the doc was competent as usual (East Tennessee Children’s Hospital has good doctors), but a bit stereotypical in that we perceived him as thinking “I’m the expert, I’ll ask the questions and give you the answers.”

He was stumped, as I said, and was getting ready to proffer a diagnosis of croup when the shift changed. It was getting very late at that point, and I had already headed home. (Side note: when we’re in the hospital, we quickly go to a shift system to get Janet’s job covered and my job covered with a minimum of sleeplessness. The timing was such that Janet would have been on Friday night, I would have been on Saturday night, etc.)

I hate to sound stereotypical, but this really is what happened. The new doc, a woman, seemed a little more likely to listen to the parents for possible clues. Janet mentioned that the last time Hannah had what appeared to be a mysterious respiratory ailment, it turned out to be a UTI. The doc said, “Well, it’s worth a try,” and ordered a urinalysis. She came back a little later and said, “You are a smart woman!” Yep. Another UTI.

The weird thing is that as many as she has had (it’s like a dozen or so), it turns out to be a different organism each time.

Anyway, the doc said, “It’s too bad this is Friday night, because we could send you home if you could go to your own doctor tomorrow.” So Janet told her our pediatrician keeps Saturday morning office hours, and the doc said, “Oh! Great! You can go home!” It was nearly midnight by this point, but they came on home, and we took Hannah to Dr. Fox the next morning.

The medicine seemed to work.

Then a couple of weeks ago it all started again. Another trip to the pediatrician this time, and no trip to the ER because at least her oxygen was staying up. But blood tests showed no problems, although for the first time one of her ears showed signs of infection—the first time for that (Dr. Fox has always commented on that being the one thing Hannah didn’t have). She started her on antibiotics for an ear infection and gave us some ear drops.

But Hannah didn’t seem to be getting any better. After about three days, it occurred to me that another time she was like this (not respiratory, but lots of nose snot, elevated pulse rate but no fever, and lots of whining), it had turned out that she was constipated. Without getting into too much detail, we hadn’t thought about this because we’d been getting dirty diapers (actually, antibiotic-induced diarrhea dirty diapers), but as we had learned before, it is quite possible to be constipated and have diarrhea at the same time.

So we got the glycerin suppositories out and gave Hannah a treatment. Got a really strange mess out, Hannah went right to sleep, and the next morning her snot was completely back to normal. Go figure.

So that’s the poop on Hannah, so to speak. We’re going to try to post here every day, at least, and that will help us to be accurate in letting interested parties know what is happening with Hannah as well as the rest of us.