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.