Update

I got a request for an update, sorry I needed that shove.

The irrigations are going REALLY well. If we get the temperature of the saline right she says she doesn't even feel it. She and I invented something we call the "sloshy" dance for sloshing the solution around in her bladder so there's even some laughing and frivolity during the irrigations. I'm not sure that doing it with just the saline is doing any good so we may have to switch back to the acidic acid solution that we used a year or so ago. Katie wasn't happy to hear me mention that be later she said she's going to go into it with an open mind and hope that it's as easy as the saline.

Her teacher is coming by most afternoons and she's really enjoying that.

I was just re-reading previous posts and apparently I forgot to mention that we got permission for Katie to go back to her dance class. She only had 2 more classes before the holiday break anyway but she wanted to go back. She came home with a flyer about taking a pointe class. Of course how could we turn her down so we took her to have her fitted for pointe shoes and she'll start that added class after the holiday break.

We're going for labs here locally tomorrow and dropping off a urine sample for urinalysis and culture, we won't know any results on that until at least Thursday.

Ultrasound results

We got some not so good news today. The ultrasound report came back saying "significant amounts of debris in the bladder (presumably mucus) as well as in the allograft" (the allograft is the transplanted kidney) so they want us to do twice daily bladder irrigations with saline. That involves inserting a catheter into her bladder, hooking up a syringe and putting the saline into her bladder then pulling it back out or letting it flow back out (through the catheter.) We've had to do this before and it has helped with infections before. Katie is NOT happy because the last time we had to do this it was very painful for her. We were using acidic acid before so we'll use saline this time and see if there are things we can do to make it more comfortable. My concern is the debris in the new kidney. I asked the nurse from peds surgery who called, if the debris being there was a direct indicator of reflux (urine backing up from the bladder into the new kidney, that's something we battled for many years.) She checked and called me back and said it could indicate reflux or it could indicate that these infections (the first one or this latest one or both) originated in the new kidney. Both of which are potential problems that could be quite serious. The reflux could lead to additional surgery and the infection being in the kidney could obviously damage the kidney. So, I'm concerned. They don't want to do the test to check for reflux until the infection is cleared. I'm not sure I understand why but for now we'll go with their plan of antibiotics and bladder irrigations.

Cytogam Infustion #2

Everything went well today but we don't have results from anything, no lab results, no ultrasound results.. we got nothin' :o)

Same Infection New Bacteria

The culture results came back today and showed the growth of a different bacteria than the one from the previous infection. A new abx is being faxed in to our pharmacy and Steve will pick it up on the way home. They also want to do an ultrasound tomorrow (when we're going to be at the hospital anyway for the next Cytogam infusion) to look at her native kidney as well as the transplanted kidney. Nancy said they will be looking for stones and/or debris. I think this is more precautionary than anything. Katie is not happy about the idea of having an ultrasound because they tend to push on your abdomen with the "probe" trying to get a good look at things. Luckily we know we will have our favorite ultrasound tech Oscar and I made sure with Nancy that they will be briefed on her anatomy and what to look for so they won't spend too much time trying to look for what they would find in a normal anatomied person.

Update

Just wanted to let everyone know how things are going. We came home and took a couple of days to just rest and get the bug out of our systems. When we left the hospital Dr. M told us that Katie didn't need a blood draw until Thursday (12/4) and that we could do it at our local lab instead of coming down there. That was great news. Yesterday we were having phone problems, so late in the afternoon when we hadn't heard about the lab results I called Dr. M. Things are mostly good. Her kidney function levels are still great and stable. But... she has white blood cells in her urine. I'm not sure whether that's still or again but regardless it's a concern. Dr. M wants to wait and see what the culture shows and see how Katie does between now and when we see her on Wednesday. If she starts to run a fever or shows symptoms of an infection that will change things. I also reported to her that Katie's blood pressure was a bit high when we took it yesterday. This didn't surprise any of us as we restarted her ADD medicine which has been known to cause a rise in her blood pressure. We will likely need to adjust her blood pressure medication. We're supposed to keep tracking it and we'll discuss that more on Wednesday also.

The good news is we don't have to have any labs drawn or go to the hospital again until Wednesday when we have the next Cytogam infusion.

All in all we're really doing great!

We're Home

All of Katie's labs this morning looked beautiful so they let us go. We had a small scare right before we left when she started to feel queasy again but it turned out she was hungry. Steve and James seem to be on the mend, and I'm honestly not sure where I stand but I'm sure we'll all be fine in a day or so.

Update

It seems as though there is some kind of gastrointestinal bug going through our house. While Katie wasn't feeling well on Saturday evening I started to not feel well and went to bed early. But since I made it through the night without having to get up I assumed it was sympathy feelings for how Katie was feeling. However, this morning Steve started to feel bad. I mentioned this to Dr. M this morning and she was not surprised and said "the labs would seem to bear out a gastroenteritis piece of the problem." That's clearly not the whole problem, the antibiotics are causing intestinal problems as well. We will also have to watch now that Katie doesn't have a recurrence of an overgrowth of C-diff. I mentioned this to Dr. M also and she was aware of Katie's history with C-diff and will help us keep an eye out and treat for that as needed. In 2001 and 2002 Katie had lengthy bouts with colitis caused by an overgrowth of C-diff. It's very hard to restore the proper balance in your colon after an overgrowth, so hopefully we won't have that problem, but with these high doses of abx it's really a possibity.

So, Katie and I are here at the hospital. I'm in the Ronald McDonald lounge. They have this nice room built and supplied by the Ronald McDonald house which has a nice TV, two internet abled computers, coffee, tea, a small fridge and a nice lounge area. Katie is in the teen room doing crafts. Tonight child life does Bingo here in the RM lounge. Steve is at home sick with the stomach bug, so we're having him stay home until he's more on the mend. The saddest part about that is that the kids don't get to see each other and that's hard on both of them.

The earliest we might get released is Tuesday afternoon. We have one dose left of the abx which will be done tomorrow morning. They're drawing labs in the morning including a Prograf level. Katie's liver enzymes were slightly elevated today, if they have gone back down tomorrow it would be assumable that the rise was related to the stomach bug, if not then adjustments will need to be made to her meds since several of them could cause a rise in liver enzymes. I got the impression that if her liver test looks good and her Prograf level is good then we'll be released.