Doing better than we thought

Katie is doing really well with the Foley overnight, much better than we expected. She's also doing much better with her sleep issues, which is amazing considering we added the Foley to the mix. We've added a few things to help with that, she has a special essential oil blend that she uses under her nostrils, we read a story (or part of one) each night, and we have a set of walkie talkie's that she and I each have overnight so she doesn't have to yell out to let us know she needs something.

We're doing the abx until 5/8 so we still have a ways to go on that. And the Foley is until the urine culture after the end of the abx so... I have to get working on an insurance issue with the Foley's and bags this morning.

Sorry, there's no good news

Yesterday I called in and found out that Katie's urine culture from 4/21 was positive for alpha haemolytic streplococcus. We were to wait until our appointment with Dr. V today to discuss treatment and other plans going forward. This bacteria is similar in some way (that we don't clearly understand), we're treating with the same med as before, tigecycline, so we're back on that through 5/8 which I think is 14 days. They have also asked that we use a Foley catheter (one that can be left in place, you inflate a balloon to keep it from coming out) draining to a leg bag overnight. This of course is a very disturbing idea for Katie and of course I don't blame her, it's going to stink. We had just made some progress on her sleep issues and I'm sure this will set us back.

It's still a tough road.

Not much news yet

I don't really have much news yet but I wanted to bring you up to date.

Our biggest issue when we came home was that Katie is really having trouble sleeping. She has difficulty getting to sleep and also staying asleep. We've been trying some aromatherapy and some mommy and daddy time before bed. Some nights are better than others. Tonight she has a new aromatherapy combination to try out.

She is also having some noneducational struggles in school that are making her feel very sad so we're working on some possible solutions there.

On the medical front, we saw Dr. M on Tuesday (4/21) and Katie's creatinine is back down to 0.7 which makes us all very happy. We also had a urine culture dropped off that day the results of which will be back tomorrow (Thursday 4/23.) We see Dr. V on Friday for a surgery followup. If tomorrow's results aren't good we will also discuss what to do from there.

Home again

We came home yesterday afternoon. Katie is struggling quite a bit with eating enough so that her pain meds don't make her feel sick. She's being very difficult about taking suggestions from those of us who have been through these things. She's also very upset about having to remove the dressings from her incisions. She'll finish her abx on Friday and is already scheduled to see Dr. M on Tuesday 4/21 so she'll have labs and a urine culture that day as well. So there won't be any real new news until either then or Thursday 4/23.

Post surgery

Katie had her surgery yesterday. It was a confusing day as far as timing because everyone who talked to us had a different story about when she would go in to surgery. She went in around 11:00 a.m. yesterday and although Dr. V had thought the surgery would take about 2.5 hour it actually took 4 hours. He said "I don't want to operate on her anymore it gets harder and harder every time," and then he chuckled. The extra time was really in getting through surgical adhesions and her unique anatomy to get to the parts he wanted to remove. He said the native kidney was visibly inflamed and adherent to everything around it. Katie was much more groggy after the surgery than she usually is, in fact she wasn't even close to being awake when we went back to the floor. She had a different anesthesiologist this time, the newest one in the department, and Katie had had some stress about waking up during the surgery so I think they tried to make extra sure that that wouldn't happen. But by the time James and I came home last night she had eaten a popsicle (although it was melted a bit we fed it to her with a spoon), and some jello. She called me later when she had eaten one of the seasoned potato wedges we had bought earlier so she's on her way.

James and I are on our way back out this morning. Dr. V wants her to be on 10 days of abx and the orders for that to be finished up at home are already in the works. So the issue keeping us inpatient is Katie's pain. She has a patient controlled pain med pump for now, the same kind she had after the transplant. We will try to transition her to oral pain meds when she we think she's able to get the relief she needs with them. Obviously we'd like to be home for Easter but we'll just have to see how today goes.

Back inpatient

Katie had to be admitted to UMMS this afternoon. The preliminary report on the culture from Monday 4/6 showed growth of VRE again and with the surgery looming they wanted to get her a few doses of abx before the surgery on Thursday. It stinks but it's what we need to do. We ran into a bunch of our favorite nurses already and of course our child life friends so we'll make the best of it.

Katie remains on contact precautions so she's unable to leave her room unless it is to walk for exercise so that makes things more difficult.

I'll try to keep you posted.

Surgery date

We have a surgery date, April 9th... that's just one short week from now and significantly sooner than I had thought. However, this timing will be good in several ways. The kids are on spring break next week so caring for James will be easier and Katie will miss slightly less school.

Dr. V has decided not to save the ureter for possible later use so while it worries me a little bit it will make for an easier surgery, a likely shorter hospital stay and recovery. The inpatient stay will be just until we can be assured her postoperative pain can be controlled with oral meds. Dr. V thinks maybe just overnight.

Prayers will be very appreciated :o)