Readdmitted

Katie's morning labs showed that she was dehydrated and her blood pressure was elevated. They immediately started running fluids for the dehydration but the elevated blood pressure was an indication that she was possibly not getting enough of her meds orally due to the gastrointestinal symptoms. So, Dr. M wanted her admitted to UMMC. We were transported by ambulance from the local hospital to UMMC, not because of a true urgency just so that they could make sure we went from point A to point B without any other stops and so that the transfer could be smooth from a medical standpoint. She's back at UMMC. We believe she will be there at least until Tuesday afternoon because Tuesday is day 7 of the abx. I'll try to keep the blog updated.

I had a request for how I'm feeling, and I'm really feeling fine. I still have some abdominal soreness from time to time but mostly not where my incisions are. When you carry excess fat and they cut through your abdomen they kind of rearrange the fat and I seem to have a strip where there's no longer any padding LOL. It was funny, today one of the residents looked at me and said "where did she get her kidney?" I said, "umm from me." He was surprised because I look completely normal. I'm home this evening but I'll spend tomorrow evening at the hospital with Katie.

Tough Time

Yesterday's abx infusion went great. However, in the early evening Katie began complaining of not feeling well, and by 6:30 she was clearly not feeling well. I'll spare you the details but she's miserable. We had to page Dr. M last night for instructions and Steve is going to talk to her again this morning. She's not been through this process with a kid with bowel issues so we may have to see if she can bend some rules for Katie.

Katie and Steve are back at the local hospital this morning. I'm on my way out to drop James at the gym and then join them.

Update to IV Antibiotics Plan

We got a call from Dr. M this afternoon. She's so wonderful! She called to tell us that Katie's labs all looked good, renal function and Prograf level, but that she still does want to do 7 days of IV antibiotics (abx). However, she'd like to try to make it more convenient for us and offered to work with our pediatrician's office or a more local ER. The most local hospital happens to have a peds ER where we've had a good experience so we suggested that (because we both (Steve and I) agreed our ped's office couldn't do it) and it just so happens that Dr. M knows docs there. She called them and called us back and a doc she knows is on today and will be on tomorrow, so here's our schedule.

Tomorrow (Saturday) between 8 and 9 a.m. we'll go to the local hospital ER for just the IV abx.

Sunday between 8 and 9 a.m. we'll go to the local hospital ER for IV abx and labs but no Prograf level.

Monday closer to 8 we'll go to the local hospital ER for IV abx and labs with a Prograf level.

Monday afternoon Dr. M and Nancy will figure out what to do about Tuesday's abx. Dr. M will want to see us then anyway so we'll do that dose at UMMS she just wasn't sure if she could set it up to be done in peds endocrinology where the Cytogam infusion was done or if we would have to do it in the ER again.

IV Antibiotics Day 3

We went to the hospital again this morning. The IV insertion was pretty rough today. The technician who did it was less than happy that Katie wanted the IV in her hand, but since we had used numbing cream on her hands that's what she really wanted. The technician was pretty passive/aggressive about it, she kept saying she didn't think the hand was a good idea but she would do what we wanted, but it would be more likely to fail but she would do what we wanted etc. Then when she did stick her she had a hard time getting the IV to bleed and kept asking Katie to make a stronger fist when she had her hand as crunched as it would go. The infusion was short and painless, it was done before the labs were back so we had to wait a bit longer. Unfortunately Dr. M is not as pleased as she would like to be with the labs. Her kidney function is still stable but her white cell count isn't dropping, so we have to go back tomorrow and Sunday for more of the same. Tomorrow she wants labs again including a Prograf level so we need to get there at 8 again. After she sees tomorrow's labs she'll decide about whether we need more labs on Sunday or not. It stinks but it's better than being in patient so we're trying to remember that.

1st ER Antibiotics Visit

I just had to come in and share that our trip to the ER was relatively short and painless. They did in fact know we were coming. The meds and history questions were really minimal. We arrived at the actual ER area at about 9am and we were done and home by noon. We will have a different attending and different nurses tomorrow BUT we will have the same resident! Katie was telling him about her Daddy's stuffed mushrooms that he usually makes on Thanksgiving and he said "Yum" so we'll take him a few tomorrow.

First Cytogam Infusion and IV Antibiotics

We were at the hospital for the better part of the day. The original reason for the trip was Katie's first Cytogam infusion. This is the med she needs to fight the EBV (Epstein-Barr Virus) antibodies that I have and she didn't. Dr. M came over to see is while we were there and let us know that her creatinine is still stable at 0.7, and her BUN is at 18 down from 25 last week. However, the last urinalysis showed another increase in her white blood cell count. That combined with the fact that Katie has some tenderness over the site of the new kidney lead Dr. M to be concerned that we aren't treating the UTI aggressively enough. So, we had an IV infusion of antibiotics while we were there, and we have to go back to the peds ER tomorrow (yes that's Thanksgiving Day) and Friday to have two more infusions. Tomorrow it will be the Mommy and Katie team so that Daddy can stay home to cook. Friday we're not sure who will take her, we'll figure that out tomorrow based on how it actually goes tomorrow and how I'm feeling. The ER attending is *supposed to be* expecting us and is *supposed to have* the orders for what needs to be done, but, well, we'll believe it when we see it. Wish us luck.

Labs Day

We had to go to the hospital this morning for labs and we had to wait around for the results which will be rather typical for a few months. Around 11 we heard back from Nancy with the results, her creatinine is still at 0.7 which is great. However, her white blood cell count is up even more indicating that the urinary tract infection is pretty strong. Dr. M contimplated putting her in the hospital over night for her to have 2 days of IV antibiotics, but she had agreed if Katie was asymptomatic and "looked good" that she would try treating it orally, luckily she is both of those things so we got a prescription and were off on our way. We need to log her blood pressure twice a day for a while since the bottom number is a little high.

We go back on Wednesday for the first outpatient cytogam infusion. This is the med that is to treat the Epstein-Barr Virus discrepency between my kidney and Katie's blood. It's likely to be quite a long day as the infusion itself takes 4 hours.

Nancy is supposed to call us this afternoon with Katie's Prograf level and to confirm her new prednisone does that starts on Thursday.