Same Story

We had labs yesterday. We sent a urine because it's on the lab form but Dr. M's nurse had said that it would be a pointless culture because she would still be covered by antibiotics. The nephrology secretary called today and said that Dr. M had seen our labs and that we needed to come in on Monday for labs at the hospital and then to see Dr. M. Obviously we were concerned about what was happening, and she didn't have any info. Dr. M finally called us back this evening and said that Katie's urine has bacteria and white blood cells (two indications of infection) and her creatinine has gone up to 1.3 (which I think is due to dehydration) and her prograf level was 11.8 which is high as well. So she wants to see her, but I'm not sure exactly why. The worse news is that she either still has the previous infection or has a new infection and that's just awful news. It means that manually cleaning out the bladder didn't do a darn thing. And it means that they will likely start talking about taking out the native kidney sooner rather than later. Forgive me if this is a repeat of information but Dr. V, her surgeon, said this would be a substantial surgery and that he's trying to figure out in his head how to do it and still save any savable parts that he might need to use later to replace her bladder tissue.

Flashes of hope was canceled this week due to weather. We'll get rescheduled the next time they come to UMMC which will be in March.

Finishing Antibiotics Again

Yesterday was the last day for the Vancomycin (which I've been spelling wrong) and today is the last day for the Ceftriaxone. We have blood and urine labs on Wednesday so we'll have preliminary urine results on Thursday. In the last lap around this circuit the first urine culture was negative, and the subsequent ones were not (and they got increasingly worse.) So I'll be happy with a negative culture on Thursday but happier the following week. We have blood and urine labs that following Thursday (2/5) so that preliminary result will be back on Friday (2/6.)

We have some fun stuff coming up though. We're hoping Katie can go back to school on Tuesday (as in tomorrow), we have the letter from her doctor, just waiting for the school to give us the final ok. She'll start with 1/2 days to build up her stamina. On Wednesday after the labs we are participating in a program called "Flashes of Hope". Then on 2/7 we're participating in our first Starlight Foundation great escapes event. Katie and I will be taking a class at the Young Chefs Academy of Rockville. We're also still waiting on the Make A Wish volunteers to call to come out to talk to Katie, according to the letter from them that phone call should come in any day. So we have some fun stuff coming up.

Apologies for not updating

I'm so sorry that I haven't updated the blog.

We came home on Saturday late morning. After saying no to going home on Thursday Dr. M changed her mind on Friday, and then things didn't get set up until Saturday.

She had the cystoscopy on Friday. Dr. V said that everything went well and he did clean out all of the mucous. However, he didn't find any clumps like he was kind of hoping to. That would have made it easier to confirm our theory about the clumps holding various kinds of bacteria and the abx not getting completely through the clumps. Maybe getting the bladder all cleared out will help matters but we're just not sure. She's on two abx until the 26th of this month. One of them is given every 8 hours which is a bit of a pain but well worth it rather than having to remain inpatient.

Next up is labs on Tuesday. I have to call Dr. M's office tomorrow to find out where/how they want them done and I need an order for them. Our discharge papers say to have them done at Labcorp but there was no lab slip and she told Steve she was going to want a trough level of one of the abx she's on. We could have them done by peds at home which would be our preference but we'll call tomorrow and see what she wants us to do.

Staying

We're likely not going to get to come home until at least early next week. We don't know how long she will be on the abx and we can't seem to get an answer on what they will be using to make that decision.

If anyone wants to come visit over the weekend I would welcome the distraction, just please call first, if you don't have my cell phone number leave me a comment here and I'll email you with it. I'm going to take the laptop with me so that maybe I can get onto the hospital's wifi system now and then.

Dr. V to the rescue..

... well that may be much more dramatic than it will actually be but we'll see. Dr. V stopped by yesterday and said what I was hoping he would say (even though I hadn't mentioned it here or to Katie.) That he wants to take Katie into the OR and use a cystocopy procedure to clean out her bladder from the inside. Since Katie's bladder is man-made and made of bowel tissue it produces mucuos. Since the transplant there has been more mucuos than normal, likely due to the fact that in order to implant the ureter from the new kidney they had to cut into the bladder, so it's not unexpected. But we're all thinking that all of this bacteria is hiding out in that mucuos and that the abx are clearing out what they can reach but that they aren't penetrating the thicker sections of mucuos. Then when the abx stops the bacteria grows up again. Dr. M wants to wait until we've gotten some good coverage with this round of abx so that there's less bacteria in the bladder that could get splashed around while he's in there so their current plan is to do the procedure on Friday afternoon. He said he thought we could likely go home after the cysto. I told him that Dr. M seemed to think we would have to stay for the full course of vincomycin because it's unstable. He said it could be monitored and if it seems as if it's going to stay stable it can be done at home. So when Dr. M came back I discussed that with her and she agreed. I think she was really relieved that he wants to clean out the bladder, as she seemed to lighten up quite a bit. She's a busy lady this week, there are 5 peds renal patiets that are inpatient right now, that's a lot, usually we're the only ones.

On a separate yet related note, the nurse came in last night and said she was going to be bringing in Katie's dose of Ceftriaxone but I said... "ummm, not without a resident explaining to me why we've added a new abx." I also told her to tell him/her that "because it was ordered" wasn't going to cut it as an explanation. So he came in and said that the culture from Monday morning grew ecoli. Now I know you all aren't as swallowed up in this stuff as I am so I'll recap for you. The first rehospitalization was for ecoli, the second one was for vincomycin resistant enterococcus, and this one was for coagulace negative staph as reported by a culture from last Tuesday. So I asked him if this culture from yesterday grew the staph too or just ecoli and he said just ecoli. I then reminded him (not that he knew but I like to pretend they do LOL) that that sample was given BEFORE we began treating the staph. If you think none of that makes sense, you're not alone. I told him that when the team comes through this morning I'm going to want some answers on why we're treating a bacteria that no longer shows up on culture, etc.

It's been impossible to get into this room to post. This morning I've snuck over in the morning before everyone gets up. It should be easier to update you over the next two days as I'll be at home in the evenings/overnights.

Wish I had better news

We are admitted and we are likely here for at least a week, possibly 10 to 14 days. The medicine that Katie is on does not always stay stable in the blood so it has to be repeatedly checked and adjusted as needed.

She is still on contact precautions so she can only leave her room to go for walks for exercise. She can't go to the teen room or to any child life events.

Dr. M really wants Dr. V involved and it sounds like he wants Dr. V (as Katie's urologist) to figure out a course of action to clear these repeated infections. So far no one has heard back from Dr. V so that's not good. We know he knows she is here as Dr. M told us that and we saw his nurse practitioner here yesterday.

We're going to try to have Katie's home teacher come here to work with her so she can try to keep up and it can also serve as something else to occupy her.

We've started right back in with resident problems. They didn't get ANY of her meds to her last night from the hospital we gave them to her from our home supply. No dinner last night. It took me prodding to get her meds this morning. They wrote her for a renal low phosphorous diet which is wrong and we have to have this argument every time we're here. This time I told the senior resident that, she said "but we got it fixed" and I said "but 3 weeks from now when we're back we'll be having the same argument and it's just not acceptable anymore." Dr. M was standing right there and agreed that there was no reason for them to put her on anything but a regular diet. I'm still trying to get menus for her so she can choose her meals, I started trying to get them last night.

I need to get back to her.

Pain again

Katie started having pain in the area of the new kidney last evening. We hoped that it might have been bowel related and it did get better overnight, but it has persisted throughout the day today. So we're going to call Dr. M in the morning and we're quite confident that she will want Katie admitted to the hospital again. I suspect that this won't be a long stay because of her having the PICC line. I think they will want to run fluids, check labs, see if the fluids resolve the pain, get the results of the culture, get abx started, and that as soon as we can line up home health to bring us the meds we'll be able to come home. Now... all that being said... we don't know what kind of bacteria we're dealing with yet. The first of this round of cultures grew a new bacteria which name escapes me at the moment but there's no guarantee what this second one will grow. If it grows a resistant bacteria it could be an obscure abx, or something we can't do at home, or something that requires too much monitoring to be done at home. There just aren't any guarantees. I'll try to keep you updated as much as possible.

Saturday call from Dr. M

It's not quite as bad as I was expecting when nephrology's number came up on the caller id but... Katie's kidney function still all looks good, but her prograf has dropped so we've made an adjustment to her dosage beginning tonight. And the urinalysis came back showing bacteria and white blood cells in the urine so there's still an infection of some kind. She doesn't want to treat her until the culture comes back because she's had a myriad of bacterias and giving her abx now would likely not cover this specific bacteria and would cause side effects we can do without. She's also consulting Dr. V (our surgeon) to see if he has any other advice for getting rid of these infections. She still has the PICC line which is a really good thing at this point because we're hopeful that we can avoid a hospitalization. However, we had been hoping Katie could go back to school on Tuesday and that's not likely to happen now.

Not much new but...

The organism that’s growing is only sensitive to IV antibiotics, but the colony amount is so small they don’t want to treat unless she’s symptomatic, so she’s to drink lots and cath lots and hopefully the culture that we take tomorrow will not grow any bacteria. Going back to school is on hold until at least Monday when we get tomorrow’s culture result.

Update

An update is long overdue and I'm sorry. I was waiting to have all good news and it's obvious that's not going to happen.

We dropped a urine culture at our local lab on Saturday. We had to go to the hospital on Tuesday for the next Cytogam infusion and we were all anxious about the results of that urine culture. We also discussed her going back to school on Monday and Dr. M agreed with P.E. restrictions. The urine culture came back "no growth" otherwise known as negative. Dr. M wanted to immediately have the PICC pulled in interventional radiology. Katie was freaked about that so we got permission to have home health pull it. Dr. M and I said that was good because that would give us a chance to wait for the urine culture we had given there that same day (yesterday.)

Around noon when I hadn't heard from Nancy I called and left her a voice mail message. She called back around 2 and said that the lab hadn't run a urinalysis only a culture and the preliminary report wasn't back yet but would be back around 3.

Just got off the phone with her... the preliminary report shows 50,000 growth of a different bacteria (a new bacteria thankfully.) So we're keeping the PICC for now. And Dr. M wants Katie to cath 6 times per day. The plan is that Dr. M wants to see the final report tomorrow. If it comes back saying there's no recommendation for treatment then we pull the PICC and she goes to school on Monday. If it needs treated then we will need to keep up the increased cathing, and do antibiotics (hopefully either oral or at home with the PICC) and no going back to school.

The other piece of new information is about another possible surgery. When we were last inpatient Dr. M mentioned the possibility of removing the native kidney because it's a potential area for bacterial growth. Yesterday she said the Dr. V (our surgeon) usually likes to talk about doing that between 3 and 6 months postop from a transplant... sooner if infection has been an issue. So it seems as though we'll be dealing with that soon also.