A little update on Wilhelmina…

Wilhelmina is going on 8 weeks with her nephrostomy tube. It is not the best relationship in the least, but she is handling it quite well . She gets caught up in it, is tired of having it attached to her, the insertion site in her back gets itchy with buildup and though she is amazingly calm when I change her bandage, her skin is getting raw and bleeding in a few places because of the tape. She never pulls at it and is mostly always conscious of where it is… she even forgets that her bag is on her at times and starts looking for it… We are all ready for it to be out though, we won’t miss it in the least.

We finished her last course of antibiotics a few days ago and she is happy to not have it anymore. 9 weeks of full antibiotics was quite enough and I am not looking forward to her having them again.

In my last update post I explained that we were waiting for the next test which was the DMSA, well, we did that on Sept 1st and it went quite well. The worst part was that it took 7 times to find a vein to inject the radioactive contrast. It was awful, but the technician in the Nuclear dept. at the Montreal Children’s is amazing. It makes things easier when the technicians and nurses show empathy instead of looking annoyed as has happened in the past…

Once the contrast was in, we needed to wait about 4 hours before doing the tests. We went out for breakfast and then went walking around the mall and just hung out while we waited.

The test was about 30 min long and Willa held my hand and watched the TV and the screen that showed her kidneys while the test was happening and it was over pretty quickly.

On some tests, you can get an idea of what the results will be but this is one that is a bit harder to decipher. Her left kidney lit up quite well which meant that it was all healthy tissue, but the right had much less healthy tissue and only showed up slightly, though that it showed up at all was a good sign…

We only had an appointment with Urology in a few weeks but have a nephrology appointment scheduled for this Wednesday, so today I called her doctor to know if I could have the results from the test by phone… If you remember from that last post. 20% or more function means that she will be getting a reimplantation surgery in which they will take out the defective section of the ureter and reimplant it into the bladder. 10% or less menas that they will be taking out the kidney altogether. Between those numbers is a grey area that will be up for discussion. So these test results are really the last piece of the puzzle to know what the next step is.

Oh, can you believe that I have never met her doctor? Seriously. Since July, during the time that she was hospitalized and every appointment we have had have been with one of the residents or with another doctor that is taking over his patients. Each time we should see him he is either in surgery, on vacation or gone for the day.. Everybody speaks so highly of him though and I have not heard one negative word about him (he is the head of the department) so I am starting to think that he is some kind of mythical creature…

So today I called to see if I could get the test results by phone. His secretary called me back saying that he was gone for the day and will be in surgery all day tomorrow so when I said that I was going to be in on Wednesday she squeezed us in before the Nephrology appointment, so hopefully we will know the results and hopefully finally know when surgery will be…

I can’t wait for this to be over… for her to have a bath, for her to be able to play and get dirty… to get back to normal…