nephrostomy – Page 2 – a hippie with a minivan

Surgery…

Willa is in surgery right now…. It was so hard letting her go.

Thank you everyone for the kind words by e-mail, through Facebook and here on the blog…

I will not have Internet access for a while as I will be staying with Wilhelmina but I will try to update as soon as I can.

UPDATE: Simon here, back from the hospital. The surgery went well, but was longer than expected, so the wait was quite nerve-wracking. Willa has tubes all over, but she is doing well, and resting. Melissa will be back with a more detailed account soon.

Getting nervous…

On Tuesday I woke up thinking that we had two weeks left until Wilhelmina’s surgery… As I changed her bandage I thought… “maybe just one more time after this…”

But then, just before noon I got a call from the hospital telling me that her date has been moved up to the 4th… next Tuesday. Just one week from the day.

So soon

I am not a very spiritual person, but certain days hold more memories than others and October 4th is one of those. The most important memory is that is was my stepfather’s birthday and though I think about him nearly every day, having her surgery scheduled for the same day just feels right in a way.

So I am working hard to process all the apples that we picked on Monday so that I don’t lose any the time that I am gone and I am thinking about the types of meals and trying to plan a bit ahead for the time that I will be in the hospital with her. Never leaving her side has the disadvantage of not being able to eat very much, or eat very well. So I am planning on making and dehydrating soup to bring and making a few other treats and snacks that will be filing and will keep the time I am there.

But in this time of preparation, I am also getting nervous…

This morning the urology nurse that I really like called me to say that she will be on vacation and to give me the contact number for another nurse if I have any questions. She then told me what to expect for the pre-op on Monday and then a bit of what to expect for the surgery. It made it much more real. My daughter will be taken from me in the waiting room and brought into the operating room by herself. Though the surgery is expected to take 4-5 hours, I have to remember that there is about an hour of prep before that time starts and then about half an hour or more after until she is brought into the recovery room. After that, her transfer to her room will depend on how she is recovering from surgery and there is a possibility that we might spend the night in the recovery room and not in a room.

We will know a bit more on Monday during the pre-op but I would rather remain ignorant at this moment…

Though I am looking forward for this to be over with, to no longer have the nephrostomy tube to deal with, at least at this moment she is happy and doing so well and I am able to hold her when she needs me and when I need her. I have a feeling that the time that she will be in surgery will be the longest hours of my life. I know that this is what she needs and that there really is no alternative, but then there is a part of me that just wants to whisk her away and say that they can’t touch her… she is my baby…

Just 4 more days…

I need to stay strong, but it is so hard some times.

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…