Cystoscopy and a Birthday Party

I'm sorry it has taken me so long to blog about the cystoscopy. I've started my new job in medical transcription, and Katie's birthday party was this past Saturday, and one of her counselors from camp kydnie came down and spent the weekend with us (which was GREAT!)

Here's what I wrote at the hospital (on Wednesday 10/8/08):

We got on the road at 10:20... only 5 minutes after we wanted to leave. Unfortunately, about 10 minutes in to the trip we realized we had forgotten blankie and floppy, Katie's beloved baby blanket and stuffed bunny. So, I dropped Steve and Katie off at the hospital and headed back home. I got back to the hospital at about noon and reunited with them in the PACU (pre/post anesthesia care unit.) Dr. Voigt literally followed me in to tell us that his OR schedule is way backed up because a baby was born with his intestines on the outside of his body and he needs to take care of that first. Obviously, we were very understanding.

However, Katie couldn't eat or drink and she got pretty annoyed about that throughout the day. She didn't go into the OR until close to 5pm! The procedure went really well. Dr. Voigt said that her bladder looked better than he expected. He did take 5 small biopsy samples to be sent to pathology. We supposed to call his office if we haven't gotten those results by this Friday (10/17/08.) Katie spent very little time in recovery and we were on our way back home around 7pm. She went right to bed.

Luckily we had asked Grandpa to come and hang out with James until we got home. Since she was originally scheduled to go into the OR at 11am we kind of thought we might have been home by the time James got home from school at 3pm but.. that didn't happen. We even had to ask Grandpa to cook dinner for James.

For the next day she was a little sore when she cathed but by Friday she was completely back to normal.


Here are some pictures from Katie's Birthday Party:

This one is of Katie and one of her counselors from Camp Kydnie, her visit really made our weekend!!Everyone had a great time. At the party everyone tie dyed a t-shirt and a pillow case and decorated a canvas tote bag. The next day Katie, James, her counselor and her cousin/bff dyed all the left over stuff... I'm still washing everything up.

And finally... I dropped off the sample for the more extensive test for me and we should have the results by the end of this week.

Trip to the OR before the big surgery

Katie has to have a short procedure this week on Wednesday afternoon. It's an easy procedure called a cystoscopy. Her surgeon wants to send a camera in to take a look at her bladder and also take a biopsy of it. He just wants to make sure he won't find anything unexpected when we get in there to do the transplant. She will miss the whole day of school on Wednesday and then school is closed on Thursday which works out very well in case she's not completely back to normal by then. Even though it's a quick, easy procedure that she has actually had done many times, it still invovles anesthesia so there's always risk.

Just to follow up on my previous post, I haven't received the lab slip to go pick up the materials needed to do the new test. I'm hoping to receive it this week so that I can plan to do the test next Tuesday since I really need to do it on a day when I'm home all day.

Snag

We have hit a snag in the path to having me officially approved to be the donor. One of my tests came back with a result that's not acceptable. We're going to run a more extensive test in a different way to see if we can get the result we need. For those of you inclined, please pray that this new test gives us the result we need so that we can move forward. Thanks.

Just a little update...

It was brought to my attention that I didn't list our possible surgery dates here. We are looking at November 12th or the 19th.

Also, I did reach the new director and the new assistant director of camp kydnie today (they were on staff before but are in new positions.) They had emailed Katie's counselors that we're trying to reach but they said they will email them again.

We have Camp All Star coming up the weekend of October 18th, and the weekend before that we're having a birthday party for Katie.

This Donor is Exhausted!

Today was my long day of donor testing. I could go into detail but suffice it to say... it's over and I survived. The actual testing wasn't bad at all, it's the human factor that annoys the snot out of me. Everyone seems to think that things will be fine from this point forward, although there is still considerable drama over the one medication that I take that is typically a treatment for diabetes. The donor coordinator nurse said she will have all my results in about 2 weeks and will call me then to review them and let me know about any follow up testing required due to the results.

Katie has Dr. Voigt (her surgeon/urologist) and a renal ultrasound tomorrow, and then an EKG and echocardiogram on Monday.

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

Looking at Dates for Surgery

That's right, one of the things we discussed today with Dr. Mendley was possible dates for surgery.

I had a TON of blood drawn before our appointment with Dr Mendley, and also a urine sample. I'm very nervous because I have had protein show up in my urine before and I'm hoping that that either won't happen or it won't be a deal breaker.

Dr. Mendley wants to try to help Katie with her energy level between now and the surgery so we're going up on her Procrit (bed blood cell booster given as a shot) to every 2 weeks from once a month. And her phosphorus went up a little so we're adding more of one of her capsule meds called Phoslo.

Since we have me as a match, and all that's left is the workup Dr. Mendley said we should start talking dates. We asked that we please not do anything in October because of the birthdays adn that would likely be too soon anyway. The first week of November is out because of something going on at the hospital. She said the earliest would probably be the 2nd or 3rd week of November. Since Katie is relatively stable waiting a month from then wouldn't be out of the question either. She asked us to think about it, talk about it as a family and let her nurse know what would be our preference. Obviously there are doctor and surgery schedules that have to be worked around but they will work with us as much as possible. Steve and I would just as soon get the surgery done so we can move on, so I'll be emailing Nancy (the nurse) to let her know that the earliest they think will work is fine with us.

After the appointment Nancy gave us the order for the EKG and Echo, and the chest x-ray. The former are scheduled for 9/22 and the latter was done on a walk-in basis today. Katie also needs to see Dr. Voigt and I set that up for 9/19. On the 30th we will go to the pediatrician's office for her to get an MMR booster, a tetanus shot and a tuberculosis test.

We were able to meet with one of Dr. M's transplant patients today and his Mom who was his living donor, so that was great. They were very kind and generous with their answers and I have their contact info if we think of anything else to ask them. The patient is younger than Katie (only 7) and a boy, but it was still great. I do however want to get serious about trying to reach some of her friends from camp kydnie. Email hasn't worked so I'll be making some phone calls tomorrow.

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

Good News!

Small piece of news before we move to the big news... we found out last week that Katie's creatinine was back down to 4.6 and that made her happy, but it wasn't a dramatic enough drop to cause any change to our course.

We were out of town for the weekend and came home to a message from one of the donor coordinators that my blood work results were back. So I spent all day today trying to get in touch with her and finally succeeded at around 4pm this afternoon. The news is ALL good: we have the same blood type, our bloods mixed together well, and the cross match came back with a 4 out of 6 match. Typically parents are a 3 out of 6 match to their children, so we're better than average. So we have the go ahead to continue with the rest of my workup.

The timing ended up working out very well because we see Dr. Mendley tomorrow. Katie and I need to have blood drawn and having it drawn at the hospital is just a little better than an outside lab. They apparently have to take quite a bit from me but the donor coordinator says I will be able to go on living after the volume they're going to take.. seriously, that's what she said. Katie just needs one vial drawn and it is for UNOS purposes (United Network for Organ Sharing). They are ready to list Katie on the UNOS list so that her time could start running if she should need a cadaveric kidney. Your position on the UNOS list for a kidney transplant is completely based on the length of time you have been on the list so just in case a family or friend donor doesn't work out they want to list her now. UNOS requires monthly blood work so this will be the start of that, and we will do that until her surgery is done.

So, you may be wondering where we go from here. I have to have a full medical workup to make sure I'm healthy enough for surgery. On Thursday, September 18th I will spend the day at the hospital. I meet with a bunch of people, a social worker, the donor coordinator, the donor surgeon, and an adult nephrologist. And I have several tests, an EKG, a chest x-ray, and what's called a CT angiogram which is a specialized CT scan done with contrast so they can see how my renal anatomy is layed out. As long as there aren't any problems with any of those results we go forward.

Katie also has to have more testing done which we hope to start scheduling tomorrow, she also will need an EKG and an echocardiogram. She has to see her pediatrician for a tetanus shot, and she needs a renal ultrasound and a visit with her regular surgeon.

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