Sean Update

Sorry that took so long! I do have an update about Sean. His appointments on the 1st went very well, and both the nephrologist and the urologist said we don't have to go back for several months!

Sean's nephrologist was in general very happy with Sean's progress. They always send a copy of the clinical notes to me and to Sean's pediatrician and I noticed that he said something about Sean being "challenging" and not being able to look at his eyes very well "due to cooperativity" which kind of made me chuckle. I thought he did great! But he's still Sean. :)

Anyway, he was pretty happy with everything and the only thing they called back about was one of the labs. Remember how Sean was on a lower dose of some of his drugs for a while because of the Epstein-Barr virus (mono) and then he went back up again last year? Well apparently he's testing positive for that again so we need to get some more bloodwork in a few weeks and unfortunately his doctor wants us to drive all the way to the University to get it! That'll be super fun. Other than that, though, he said to get regular labs in 4 months and come back in 8, which is awesome.

The test we had to do went pretty well, all things considering. It still involved a catheter and there were 3 women doing the test, which is kind of embarrassing for an 8-year-old boy, but Sean did very well. He always looks forward to seeing Donna, the Child-Life lady, and she knew about the procedure ahead of time and she cleared her schedule to make sure she could come help out. She encouraged him to blow bubbles to distract himself and to help with the pain and it worked pretty well. (I, on the other hand, was so stressed out by the whole thing I ended up getting really sick the day after we got back! I'm glad we don't have to do that kind of stuff very often.)

The test itself went well and the urologist was pretty pleased with the results. He didn't see too much pressure on the bladder (like when urine gets pushed back into the kidneys) and he thought everything was appropriate, although he still thinks the bladder itself is too small. He said to stay on the smaller dose of Ditropan and come back in 6 months, which is kind of good and bad. I'm glad there's nothing going on with Sean's bladder, but on the other hand I'm extremely frustrated by the lack of progress on the potty-training. I would really like to get that more under control!

Anyway, that's the most recent information. I'm not sure yet when we'll be going to get that bloodwork but I'm pretty sure we'll just drive there and back so Sean doesn't miss too much school.

Have a great week!

Laurie

Next Appointment

Just a quick update: Sean has an appointment with nephrology on Wednesday, August 1st, and his urologist was able to schedule that other procedure for the same day, so I think we will be heading for Cedar Rapids on Tuesday the 31st and then go back home after his appointments on Wednesday.

Let me know if you want to get together! I'm thinking we might go swimming at Cherry Hill if it's warm enough.

Laurie

Sean Update

The kids and I had a great time in Iowa City and Cedar Rapids this week - big THANK YOU to all our friends who housed and fed us! It was nice to see some of you again and we had a really nice time. Grace did really well in the van and the boys didn't fight TOO much this time. :)

Sean's visit with the urologist went well. Actually we didn't see the urologist but a Nurse Practitioner who's been helping us with all the bladder issues. She was greatly dismayed by the results of Sean's urodynamics test (where he pees in a special container and then they do an ultrasound of his bladder) so she's going to talk to the urologist and it looks like we'll be going back in a few weeks.

Remember last time when I said Sean had voided the most he's ever voided before? Apparently this time he went even more than that AND he still retained another 3 ounces in his bladder - obviously not good, since the point is to empty the entire thing! The NP walked in the room and said "Sean, you have the bladder of a grown man!" (Seriously, he shouldn't be able to hold anywhere near that much urine.) She said she would ask the urologist about maybe cutting his Ditropan in half, because it might be that it's working too well and making his bladder TOO relaxed, but she said she's also going to recommend a VCUG to double-check that the extra pressure in his bladder isn't going backwards up into his kidney and damaging it.

Unfortunately, that's an extremely invasive and uncomfortable test and it's one we've been trying to avoid for a quite a while. I don't think he's done it since before the transplant but I can't remember for sure. So I'm definitely not looking forward to that! I'm sure Sean doesn't remember it but he's old enough now that it's going to be kind of difficult to convince him to hold still. It's one that he has to be awake for, since anesthesia would put the bladder to sleep, so he's not going to like that.

Anyway, the NP said she would get back to me about scheduling that test. I know he has an appointment with nephrology (the transplant/kidney people) on August 1st, but I don't know if we'll come up a day early for that or not. It kind of depends on whether they try to squeeze this test in the same day or make us come back another time.

So I will let you know! Thanks for checking up on us! :)

Laurie