We got home from the hospital on Friday evening after a little more than 48 hours at the hospital. We went in Wednesday afternoon because of some vomiting and a rising temperature. They started blood work as soon as we got in to check the regular stuff and for blood cultures to check for infection. Because of all of Aida's craziness, she has to be admitted for the 48 hours it takes for the blood cultures to grow (or whatever they do).
Unfortunately, our room on "the floor" wouldn't be ready when clinic closed a 6, so we were sent to a room in the ER. Having just been in the ER two weeks before, I was not excited about that plan. Sure enough, it was a hassle, and it was about 10pm before we got our real room. Aida had really only eaten once all day, but at 315a, she got back on track. That is the eats-all-the-time track. We've all been saying that when she's off steroids it'll be better, but her dose is lower than ever these days. No one told her appetite. And there is no holding her off...not if you intend to be in the same room. Or even the one over. Anyway, after a rough day Wednesday, she had a really good day Thursday. She was all smiles, and since she was just there for observation and to wait it out, it was a pretty relaxed couple of days by hospital standards. She didn't feel well Friday, but we were going home, so at least I was happy about that. Exhausted fom a night of seemingly endless eating...but happy.
We've learned what to expect in dealing with all the hospital stuff in general, and I am better each time at doing what I need to do (and saying what I need to say) to make our lives as easy as possible. Still, over the course of the two days, Aida managed to have 2 or 3 unnecessary tests. (Health care costs, anyone?) I was at home getting our stuff together during the first test and argued about the second one. The third wasn't worth discussing. There's a lot of picking our battles in this setting for sure. So though it was a pretty calm couple of days, it was also frustrating. We didn't see OUR doctors until we were discharged...when I had them paged. The car was packed, I'd signed th discharge papers, but we waited and waited. There was no explanation as to why our doctors didn't even stop by during our two days. We were all a little annoyed. It turned out that the stupidity in the ER was because the staff there did not read her chart which already had a treatment plan or whatever from her doctor. It was only supposed to be our holding room for a few hours, but she ended up with a stomach ultrasound and a head CT. Seriously. We had a restful day Saturday, but I know you can still hear my frustration. Imagine the post I originally started working on as we waited for our doctors to come on Friday. :) I realized pretty quickly I wouldn't be posting it, but it made me feel better at the time.
The good news is, Aida doesn't have a bacterial infection. She did/does have a virus apparently, which was the official guess from the previous visit as well. The disappointing news is that any time she has a fever, we're in for 2 days at the hospital at a minimum. She can't afford to let a more serious infection go undiagnosed and untreated, so we have to be extra cautious. And there's not much hope for avoiding the viruses it seems. We're doing our best, but the doctors said it'd be almost impossible for her not to get them anyway. I guess we're working to reduce the occurrances. Funny thing - on Tuesday before all this started, one doctor told us that, of course, we needed to be very careful and use common sense; but that for our own sanity, we should still leave the house occasionally. I was pretty excited...now I'm pretty nervous. If you do see me out, I'll be the one with the hand sanitizer, Clorox wipes and blanket draped over her car seat...all of which is terribly unnatural for me.
In other news, Aida has surgery scheduled for July 2 in Cincinnati to have the lesion on the back of her head removed. In addition to that significant event, I'm pretty excited about actually getting a few days with the doctor there. She's like the good parent or grandparent that makes every kid think he/she is her favorite. :) Other than that, I went on a fun Target run to get finally a "go bag" ready like the agents on "Criminal Minds". ;) Really, I was half way there already, but after this week and the likelihood of similar visits in the future, I needed to make it for real - everything for 2 days at the hospital from toothpaste to bottles. It was like the shopping trip before the a big, fun trip when I was a kid - except without the big, fun trip part and it was my money. :) At least it will make those visits a little easier.
Even among the viruses and fevers and whatnot, we're getting more and more smiles and wannabe laughs. She's looking more like Mark when she grins! Please add NO viruses OR infection to the list of big asks when you're praying. :) That would truly be a miracle! Love to all until next time...
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