Family Life – Page 10 – 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…

letting go…

This summer has marked a big turning point in our family, a summer full of new gained independence. When I was young I was walking across town by 6-7 years old, going to the park, heading to the store and was almost never at home… Things have definitely changed. Not that I believe that crime is up or that kids are less safe, but I believe that people keep to themselves more, communities are more closed, kids more controlled and there is less trust all over. Maybe it is just in my community, maybe it is more widespread, but I don’t see kids walking around alone much anywhere.

Around the end of last spring, Xavier started going on his own to the park.It is not far, it is pretty direct but he had never shown any interest before and I was just waiting for him. It was only for a few minutes and he was too nervous to stay too long but he went and came back quickly, and went a few times after that… however, when I would head to the park with the kids there were times that we would take other routes and he couldn’t get his bearings so I didn’t think that he was quite ready to explore much yet.

However, a few weeks ago he went out on his bike and stayed for a bit longer. I wasn’t worried, Xavier is quite cautious and in most of the things he does, he has trouble testing his own limits until he is completely comfortable that he can do something… (of course then there is no stopping him!)… then I get a bit more nervous…

When he came back, he told me about all the places he had gone… he explored the neighbourhood, went to the limits without crossing any of the big streets. My heart stopped for second… he had gone so far, he had explored so much. He found paths that lead between houses, and he had gotten lost and then found himself again, he saw where Simon takes the bus and then when he got home his mind was set on picking Simon up at the bus stop when he came home from work. There is a big street to cross… it was farther than I thought I would be comfortable with… but he explained the way perfectly and I swallowed my fears and let him go.

So he left….

and came back beaming next to Simon…

and

The next day,

Colin went with him.

Since then, Xavier and Colin, my 9-year-old and my newly 7-year-old, have headed out on their bikes or by foot, exploring the neighbourhood, meeting kids (well, before school started again) and on almost a daily basis they head out before supper and come back with Simon, Walking or biking the 3 km (1.8 miles) to go pick up their father…

It is hard to let go of some fears at times, but it is the only way to let them grow… and I am so happy that they are not only finding this new independence but there are gaining the confidence that comes with it.

How far do your kids go? How old are they?

Seven!

There is now a seven year old in the house. I can’t believe it! Seven years ago yesterday, Colin was born…

Colin is sensitive, loving, empathetic and is always the first to give something up to make another happy.

He is easy going, has a great sense of humour and is always wanting to make people laugh…

There are really not enough words to describe him, he is just an amazing kid.

This year, his birthday coincided with the big Not-Going-Back-to-School picnic in Montreal… he was so excited that not only be 7 but he would be hanging out with all of his friends and making new ones… (the turnout was about 250 people this year!)

In the morning we headed out for breakfast per his choice at a local breakfast restaurant and then headed to Montreal for the picnic…

We spent the day there… from 11am to 7pm the kids ran and played and just came to touch base once in a while but not for long… He didn’t mind at all that the cake and “birthday” was going to be the next day…

His birthday cake request this year was a bit more complicated then previous cakes I have made…

He wanted a vanilla cake with chocolate icing but he didn’t stop there… he wanted another smaller cake on top of that with strawberry icing. It turned out so much better then even I had expected…

I’ll be adding the recipe in the next post…

He put his Lego set together, played with his brothers and sister, made poutine, played a few party games and then had cake..