Medical Maladies – Page 4 – a hippie with a minivan

Late night last night…

Last night I got all geared up to give Wilhelmina a sponge bath…

and when I say all geared up, I mean it… besides washing her with a cloth when she is dirty on a regular basis, about once a week I do the big clean up. I take her bandages off, I clean up the site where her Nephrostomy tube goes in, clean the glue off her skin and off the tubes, put fresh new bandages on and then clean her all over including her hair…

So, as I started to take the main bandage off I noticed something weird… a bit of the crust that usually accumulates around the wound was near the bottom of the bandage and there was evidence of a yellowish fluid that had dried on the inside of the bandage itself and then I noticed that the sutures that had been holding the tube near the skin were about 2 inches out and near the bottom of the bandage. I took a breath and touched the sutures to see if they would just slide back up the tube but when I did, it was the tube that slipped back into her body slightly. Not a good sign…

I had been told repeatedly that a nephrostomy tube was one of the hardest ones to deal with and that if it comes out it is an automatic ER visit and another one would need to be inserted… So when I saw that it was no longer in the way it should be, and had complete freedom of movement in and out, I knew I had to call..

I quickly bandaged it up so that nothing would move again and called the hospital to talk to the Urologist on call and within minutes I was on the phone with him explaining the situation…

So… at 8:30, we got ready and Wilhelmina and I left for the ER.

We got there at about 10pm and went to pre-triage and she was given the code P2 which is the highest priority you can get without being in need of resuscitation… that meant that we were able to go through the ER process quickly. I don’t think that her case was really as urgent as they classified her but because we didn’t actually have to see a doctor in the ER and just needed a place to wait for the on call urologist, I think that it was the easiest way to do so. After waiting a bit in the ER the Urology resident finally arrived. I found him a bit rough but he was nice, I just have a feeling that he is not used to working with kids much yet.

As I had observed, the tube was moving freely and had slipped out about 2 inches but was still functioning well. He was able to push it back into place and then sutured the tube so that it no longer could move… not to her skin, but to the rubbery plastic layer that is just over the incision. She usually is quiet and still when we are touching her bandages but I have the feeling that his roughness, not being mean but just a bit too hurried, and the fact that it most likely hurt when he pushed it back in, made the experience quite unpleasant for her.

We were able to leave right after and at 12:30am I got back on the road to drive the nearly 100km home…

Tomorrow we are heading back to the hospital to meet up with the head Urologist and make sure that everything is OK…

just 20 days left…

and… we have a date…

Today was Wilhelmina’s appointments at the hospital with the Urologist and the Nephrologist…

I finally met her doctor who, as everyone has said, is so nice and so soft-spoken. He has such a calming nature that it is hard to not be at ease.

Good news! Though she does have quite a bit of scar tissue, her kidney function is at 30-35% which is great and which means that she will be having the reimplantation surgery and in the end will have two functioning kidneys.

We also have a date… the 11th of October, the day after Thanksgiving.

4 more weeks of the nephrostomy tube, about a week in the hospital and then she will be on the road to recovery. She will need a few more tests in the future to make sure there is no reflux and everything is working well, but the worst will hopefully be over soon…

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…

Nephrostomy purse…

When I found out that Wilhelmina was likely going to have her nephrostomy tube for a few months, my mind start to think about how to make it easier for her. At first she refused carry the bag around with her attached to her waist and would crumble down to the floor screaming and kicking if I tried. So after a few days when she started to want to walk again and we headed out for a walk around the hospital one evening, I placed her bag in my purse and adjusted it for her so it would not drag too much on the ground and she was so happy. I started to think about what I would do when we got home…

The first morning we were home, Willa and I got up bright and early and I headed into the sewing room to work on a solution. In an hour I had put together a small bag tailored exactly to her size. She loved it!

After a day or two of having the strap fall down and having to adjust it often I added an elastic waist strap that is affixed with snaps. I have to say that it now work out perfectly. The waist band keeps the bag at the right hight and keeps it from slipping or moving around and she can use the shoulder strap if she want to or can use just the waist strap…

(the waist strap is under her shirt here and besides the tube coming out from her shorts, you can’t see that she has the nephrostomy)

The urologist nurses and the urologist that we met with yesterday were very impressed with the setup also and because she will have it for longer than usual, it keeps things neat and tidy and there are less chances that her tube will snag on something and be pulled out, which is actually a very scary thought but a very real risk.

One more step…

Another half day spent at the Children’s hospital today..

First thing was the ultrasound at 8am… Wilhelmina is amazing as always, she went into her “hospital mode” and laid quietly and still as the technician checked both of her kidneys and her spleen… while we waited for them to tell us that we could go I talked with three other families that were also there for kidney problems, though they were many months/years post surgery and the problems were not the same and we were able to share our stories and it felt good to talk to some people that have been trough it…

The ultrasound showed that the inflammation had gone down quite a bit in the last few weeks and there is scar tissue and though there is still some inflammation it is a lot better than it was which means the nephrostomy tube is doing its job.

The next test was the nephrostogram. The big machine was a lot more intense then the ultrasound wands, so Willa was visibly not happy, but even so she remained completely still throughout the test as I held her hand and comforted her, it also helped that the radiologist was amazing.

The nephrostogram is done in the radiology department and a contrast agent is inserted into the port in her nephrostomy tube which leads directly into her kidney… The fluid then shows up on the real time X-Ray video. This test was done so that they could see where exactly the obstruction is in her ureter. Up until now it was thought that the obstruction was at the utero-vesicle junction, however, the test showed that there is actually a segment about 1.5 cm long near the bottom of the ureter but above the junction that most likely never formed well and is so much smaller in diameter that no more then a trickle of urine can pass through it. That causes a backup in the urine and therefore dilates the rest of the ureter and kidney. It is not 100% obstructed as we thought but it is also not functional and most likely has never been.

After the test we headed down to the urology clinic to meet with the urologist and have he bandage changed and the site inspected.

So basically what the urologist explained is that now that we know the anatomy, the next step is the DMSA test to figure out how well the kidney functions. If her function is above 20% they will do the reimplantation surgery in which they will cut out the section that is malformed and reimplant it into the bladder. If the function is 10% or less they will take the kidney out altogether. And, if it is in the in-between numbers it will be up for discussion.

So that is where we are now… The next test in another two weeks and then we should get the results the week after. Usually the nephrostomy tube doesn’t stay in for so long but she will need to keep it in until surgery which will be decided upon when we know know just how well the kidney actually functions. The tube is a pain but it is a necessary evil.

So now, More waiting…but I am finally starting to see the pieces fall into place and the options of what to do next are getting slimmer… It actually feels quite good.