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.

Rough Spot

That title sounds much worse than this is but... Katie is having a rough day. She's having some side effects from the prednisone specifically difficulty sleeping and moodiness... not a good combination. She's very upset about having to go to the hospital tomorrow and now says she didn't know she was going to have to go back this often even though it was clearly explained to her. She's complaining about the number of pills she has to take when it's less different meds now than before but about the same number of things to be swallowed. It was clearly explained to her that we were trading one set of meds for another and one set of problems for another but with the moodiness she's just upset about pretty much everything :o(

Big Giant Thank You

I just wanted to post to let everyone know that we are all very touched by all the cards we have received. Each one is just a mini blessing, reassuring us that we are more cared for than we can possibly imagine. A big, giant, thank you to all!!

No news on the meds we'll be using to treat the UTI because there wasn't a culture ordered yesterday. We got a call today asking us to go to LabCorp and drop off a sample to be cultured.

We got out a bit today because I felt worse today than yesterday and worse yesterday than the day before. Moving is definitely key to my recovery.

Katie has an odd situation, there is what feels like a piece of metal stitch that can be felt under the skin in an area adjacent to her incision. It is causing her pain both at rest and when moving. We called the surgeon's office this morning and I think Steve got a call back from them but I'm not sure, if he did that leads me to believe they said it's probably nothing serious. I'll try to get more info on that and post about it later.

Today's Labs

Today's labs were great, her creatinine is 0.7, her prograf level is 9.1, both are good results. Unfortunately she also has a urinary tract infection of some kind so tomorrow we'll start treating that. It's usually not much of a reason to worry but I guess with the immunosuppression it's a little bit more worrisome than before. We should know what med we'll use to treat this infection sometime tomorrow.

WE'RE HOME!!

The title about sums it up. Katie was released from the hospital around lunch time today. We have to go right back in the morning for labs but luckily Dr. M understands the power of one's own bed LOL.

I also had my follow up appointment today with transplant services and I'm cleared to drive. I mentioned my magazine job and that I wasn't planning to go back to it until after the first of the year and he said I may need to ramp up my activity when I do go back after not doing anything like that for so long. I'm free to go back to my MT work when, as a family, we have time for me to do that. Right now there are a lot of meds to get used to and a lot of blood draws and such so... we'll see.

On The Floor

I have had a bit of a rough evening so I apologize for being "short."

Katie was moved out of the ICU yesterday (Monday) late afternoon, she is in a regular floor bed and a very nice room it is too. It's one of the recently remodeled rooms on the floor.

She is still doing very well and the current plan is to look at tomorrow(Wednesday 11/19)'s labs and as long as they are where Dr. M would like them to be then she will release her to come home. We will have to go right back down there on Thursday for labs but after that we wouldn't have to go back until Monday.

I know lots of you have been waiting to be able to visit. At this point I'm thinking we should wait until she gets home since that will hopefully be tomorrow. So anyone who wants to visit please give us a call as soon as tomorrow afternoon and we will let you know who plans to come when and find a time in our schedule for you to come by. I hope you can understand me being a little controlling about visiting. Please remember that Katie is on medications to suppress her immune system so it is important that we keep her from as many germs as possible. Her dosages of these drugs will be able to be decreased over time but she will always and forever now be on drugs to suppress her immune system. If you or a family member have a cold or flu or any other contagious virus, please wait and come see us when everyone is well.

Moving right along

I'm sorry that I'm unable to be more communicative. Since I was released I use all my daytime energy to help occupy and take care of Katie, and by dinner time I'm exhausted and can just work on getting home, eating, relaxing a bit and sleeping.

Katie continues to do very well. Her kidney function has gotten even better than yesterday. They discontinued her IV fluids today and as long as she's able to take enough fluids by drinking they will keep that disconnected. That means that in between infusions of meds still being given by IV she isn't connected to an IV. The plan for today had also included removing the central line IV, although it hadn't yet been done when I left around 5pm. The ICU attending doctor is trying to convince Katie's team to remove the foley cathether that is draining her bladder constantly and apparently everyone is point at each other on who will make the final call on that.

One of the two immunosuppressant meds (Prograf) is adjusted based on blood levels. Her Prograf level has come up very quickly which is a good thing, they have actually been decreasing her Prograf level. Also they have already begun to taper down her steroid (prednisone) dosage, which is very releaving to me and other members of my family who have lived through long term high doses of prednisone.

Her nurse gave her a "spa day" today, they washed her hair (with a special hospital stuff that didn't seem to do a great job but it made her feel better) and gave her a bath in bed. The nursing care has really been super in the PICU.

Well, my belly hurts and my back hurts so I'm off to bed.

We are officially post transplant

I'm sorry that it has taken me so long to get here. I was not given good information about my recovery... more on that later.

Katie is doing VERY well. She is progressing as well as possible. Her creatinine is all the way down to 0.7 and folks that's the creatinine of a normal health person born with two normally functioning kidneys. They have been able to disconned the aterial line that was being used to track blood pressure, and have also taken her off of oxygen. I have been over to see her 3 times now.. I think. There hasn't been any discussion of her getting out of the PICU and this is really a monitoring issue. Dr. M still wants her oxygen saturation monitored constantly and her blood pressure monitored more often than the every 4 hours they typically do on the floor. She hasn't really said what it is that she's waiting for that she'll loosen those restrictions. However, we're fine with that because since we've been here we've remembered how good the care is in the PICU and she does have one of the isolation rooms so it hasn't been bad.

My recovery has been much more difficult than we anticipated. We were told 1-2 days hospitalization... well that must have been for when Superman donated a kidney. I have had a LOT of trouble with gas pain. They blow up your belly with gas during laprascopic procedures so they have room to work and they will tell you that they get it all out before the finish but they are full of malarkey LOL. I'm hoping to convince them to spring me today but I'm not optimistic since I still needed IV pain meds last night. In the event I do get sprung I need to go home to my own bed to repair my back as it has been killing me since day 2. None of the chairs here have any lower back support and the beds... well they're just awful.

There have been a lot of issues with my care but I'll have to try to remember to get into them later because... my back is killing me in this computer chair.

All the thoughts and prayers are and have been very appreciated. I'll try to update again when I can.

I apologize for any typos.

Last Pre-Surgery Update

Dr. M finally called at about 8:50pm last night, she said everything was a go. As I type Katie and I are ready to walk out the door (along with Daddy, James, Grandma and Grandpa.) We will try to get an update posted to the blog this evening but no promises.

Please be thinking of us and prayers are much appreciated!

Update

Ok, here’s the most updated information. At about 5pm Nancy called and said that all but one of the tests was back and everything looks like a go. She had sat in on a pre-transplant meeting about Katie and none of the transplant people expressed any concern about going forward. There was one last test that hadn’t come back, it was due back around 7pm. Dr. M wasn’t willing to give us the final green light until she saw the results of that test. As Nancy said, “Dr. M is very thorough,” which we appreciate about her. It's now 7:20 and we haven't heard from Dr. M...

The Last Snag... we hope

I'm just about typing through tears so bear with me.

I just got off the phone with Dr. M (nephrologist.) And quite honestly I'm just going to repeat what she said because I don't really understand this very much. Part of the blood from the last blood draw (on 11/3) was used to do a final cross match (mixing of my blood with Katie's). This time the result showed an antibody that Katie has had for sometime reacted with my blood. In the previous cross match that antibody was there and yet didn't react. She has consulted with Dr. S (peds transplant surgeon) and the director of the lab at the hospital, as well as colleagues at other transplant centers. The general consensus is that this is a non-issue. However, she would like more information. Katie and I are off to the hospital in the morning (well one of the office buildings down there) to have blood drawn. They will run another cross match with some of each of our blood, as well as running one with two samples of Katie's blood. If this antibody reacts with itself in Katie's own blood then this is definitely a non-issue. If that doesn't happen and it reacts again with my blood then Dr. M will discuss this with Dr. S and they may decide that they want to do some antibody lowering treatments which would mean that we have to postpone the surgery. There isn't any indication by any of the professionals that this will mean my kidney won't be the one we use for the transplant.

I can't imagine what it will do to this family if this surgery has to be postponed.

Quick update

We did hear back from Nancy. Dr. B (anesthesia) is ok with Katie's potassium level so the urgency to bring it down is gone. However, we are still to do Katie's flush twice a day. Between that and her fatigue she's officially not going back to school.

We are to give her lisinopril on Saturday but not on Sunday, this worries me about her blood pressure but I guess it will be fine.

I also got a call yesterday about a trace amount of blood in my urine. They were going to check with the doctor and see if they wanted the test rerun but I haven't heard back.

I've kind of been wondering about how things will go with the rest of Katie's meds. I hope that they will add them back in only as needed. I mean she's on 3 blood pressure meds, a med for acidosis, potassium and phosphorus reducers, and iron that she may or may not need after transplant.

We got our first look at her immunosuppresant drugs yesterday, one of them is a very small capsule and the other is average sized. Not that their sizes really matter, she swallows up to 10 pills at a time now, but it was interesting to get to see them.

Pre-op Testing

Today was pre-op testing. Another day of living through how disjointed the hospital is and trying not to let it upset me... I didn't do a very good job. We arrived at the "PREP" center and were given forms to fill out as if they'd never known us before. An admissions rep (in a fabric walled off area in the waiting area where everyone can hear her) "confirmed our information." Then Katie was called to the back, we insisted that I go along but that rattled them. We weren't sure that the additional labs that Dr. M wanted were ordered so we had to try to reach someone in her office which took a while. Someone from anesthesia came in and he seemingly had no information from Dr. Bellefleur (Katie's personal anesthesiologist who I had spoken with Friday evening), and was guessing at what meds she should and shouldn't take the morning of surgery. He used phrases like "I understand we're considering possible transplant," and "I would figure," "seems as though." Those are phrases that I don't tolerate, either you know what you're talking about or I have no use for you, there are enough people in this process already. A few sentences in with him and someone came to get me so I left Steve to deal with him. I had blood drawn, gave a urine sample, then anesthesia popped in and said she needed to review my chart (wow what a concept) and would I like to wait with my daughter (again, wow.) They were finishing up with the anesthesia idiot, who ended up getting rather snippy with me because he was just making things up about what meds should could and couldn't take, he didn't want her to take the Lexapro but Dr. B and I had gone through her meds one by one with her giving me instructions, the only one that was/is still in question is the Lisonpril but Dr. B said Dr. M would instruct us on that. It's awful to have to ignore doctors but the communications just stink there.

Katie was visibly run down and tired all day. She's having dizzy spells when she stands up from sitting or lying. It's hard to watch. She just laid back on the exam table the whole time we were in the PREP center.

My anesthesia person came in and was well informed, ran though my history, asked a few questions, listened to my lungs and heart, and that was it. We resolved the blood draw issue and were off to transplant services. We had arrived at the PREP center at 8:10 and we didn't leave until almost 11.

We went over to transplant services. I had to see the financial person, and the social worker. Then we met with Dr. Character (LOL)... I mean Dr. Schweitzer, Katie's transplant surgeon. He's such a character. Katie asked where her incision would be and he drew it on her in pen, which was actually really cool. He went through a lot of risks with us, both from the surgery and after the surgery. It was really nice have that be an open relaxed converation, usually we get that info from a resident who's anxious to be done with us. This was a real thoughtful conversation where we got complete information not just terms thrown on a piece of paper and speedily read back to us.

When we got home I immediately took off to do my magazine job, then went to pick Katie up from Dr. Gallagher's office. When I got home there was a message from Nancy in Dr. M's office about the labs. She said they are pretty much unchanged. Potassium is still at 5.4. But she said that Dr. M seemed ok with that??? We're confused because Dr. M told Steve that it HAD to be 5.0 or below or anesthesia could refuse to put her under. And she didn't tell us if we should continue to do two flushes per day or not. She also said we should discontinue the Lisonpril on Sunday?? So I left a message in her voice mail asking for clarification on the Potassium issue, and asking if she should take the Lisonpril on Sunday or if Sunday is the first day of no Lisonpril.

We're pretty sure that Katie won't be going back to school before her surgery, at least not full days. There are only 5 days of school before her surgery, and they are the first 5 days of the 2nd marking period, the rest of which she will miss anyway.

As I mentioned above, Katie is really not feeling well. She's drained, tired, dizzy, and just generally doesn't feel well. When she's home she just lays in her bed watching tv, or doing sedate things in her bed. She's taken to carrying her blankie around with her everywhere she goes. It's hard to watch but everyone keeps telling us those are the things that will change immediately after the surgery as long as the kidney "takes."

So that's where we are, any questions ask away...

Another Snag

Katie's potassium levels are currently too high to put her under anesthesia. We had labs on 10/28 and Dr. M. called us the next day to say that we needed to try to hydrate her and also to add more kayexalate to her bowel flush solution and redraw the labs on 10/30. So we did that, and it did come down but not far enough. So on Friday Dr. M asked that we do 2 flushes per day with the increased kayexelate. So in order to facilitate that and not take Katie from her Halloween activities we pulled her out of school early that day.

She and I are both off for pre-op labs tomorrow, we expect to spend most of the day at the hospital We both have to have labs drawn, give urine samples, and have histories and physicals again. I may or may not be meeting with someone from anesthesia. It's been very frustrating trying to figure out this day because no one can tell us exactly what will happen and there's no time schedule. The recheck for the potassium has been ordered to be included with the labs already being drawn tomorrow, hopefully that won't get messed up.

If we can't get the potassium down this way, we may have to try some dialysis. So Katie and I talked to a very nice lady at our church today about local dialysis centers, and she's going to call some of her camp friends who have been through it. Ultimately if we can't get it down, we would have to postpone the surgery until enough dialysis gets done that it comes down.

I also spoke to the anesthesiologist for Katie on Friday evening. That was a bit funny, we were at our church's trunk or treat event at the time. She gave us some new info and some revised from what we knew before info:

We will need to stop one of Katie's blood pressure meds a few days before the surgery and Dr. M will discuss this with us on Monday evening or Tuesday 11/3 or 4.

She will give Katie some oral Valium upon arrival to the PACU , she will place the first peripheral IV in the PACU while she's awake as we did for the cystoscopy, then will give her Versed through that first IV.

Katie and I will both report to the Peds PACU (I was planning to ask tomorrow where I should report.)

Katie and I will be taken from the PACU to our respective ORs at the same time because there is so much they want to get done on Katie before the actual surgery starts including: a central line, an arterial blood pressure monitor which can later be used for blood draws, a couple of other peripheral IVs, and a Foley catheter for her bladder. The volume of IVs is for a couple of reasons. The central line is much more stable so it will last longer. Peripheral IVs are rarely good for more than a few days at a time, when someone is going to need the care Katie is going to need a central line is preferred. The other lines will be in place to assure access when it is needed, so should one or two of the lines fail for some reason she can still get her the medicine she needs. The peripheral lines will be pulled as they fail and as long as there is still a functioning line they won't be replaced they will have served their purpose.

She will not be using an epidural for pain control but instead a PCA that will dispense Dilaudid a very good narcotic pain control medication.

So... that's where we are. Any questions, ask away.