So yesterday went mostly according to plan for my daughters double nephrectomy. But still a hell of a ride for us. And some complications at the end.
My wife Michelle and Taylor slept in the hospital room on Thursday night and then I met them at the hospital at around 7:30 after getting the dogs in order for the day and making sure to pack up some stuff for the day at the hospital
Getting prepped for Nephrectomy
Taylor was wheeled out of the room Alberta Childrens Hospital at around 9:00 am or so and then we talked with the urologist who was doing the surgery, a really nice and quiet doctor by the name of Doctor Weber.
He had already explained how this was going to work and thought that the surgery would likely take about 3 hours as he had to take out both kidneys and also had to prep the area and put in the tube for the dialysis.
We then spoke to the anethesiologist and decided that for post surgery pain control that they would put in an epidural and if there was an issue with the vertebrae being too tight they would just setup a more maunal system.
Great, then they wheeled her into the Operating Room
And we waited. And waited, and waited some more.
During the surgery there is no real updates. Eighter they are prepping, or in surgery, or in recovery. And we expected that we would hear something by around noon or 1 PM.
Finally around 5:00 after getting a few mixed messages Doctor Weber came to our room to tell us how things had gone and what was happening
Nephrectomy Post Op
Doctor Weber expected the operation to take around 3 hours and in the end it took more like 5 and was just a little onger than they expected. No problems at all. The problems started as soon as Taylor cam out of the anasthetic.
As soon as she woke up she started barfing. By the time we saw her at around 5:00 or so she was really fighting with nausea and throwing up still.
Because the surgery was pretty long there were a lot of different drugs used and it was very difficult to pinpoint exactly what was causing her to throw up. So they tried every anti-nausea med they could lay their hands on.
After a couple hours of this and by the time we finally went into the recovery room with the doctor they had exhausted most of the options and were narrowing things down to either the Fentanyl in the epidural, or the fast running in and out of the initial dialysis. they slowed down the dialysis and wheeled Taylor back into her hospital room.
At this point I escaped to look after our son Jaiden who, with all the craziness and I am sure a bit of nervousness from the Instagram pics, got homesick and just wanted his mom or dad. I just love my 11 year old and how honest and needy he can be. It puts a smile on my face to be so loved.
This was already planned by us as Michelle wanted to stay with her Taylor on the night after surgery and I was happy to get my son home from his friends house.
In the hospital Michelle was looking after Taylor and they had one nurse dedicated to her and they seemed to get most of the nausea under control and Taylor was up and down all night awake and a bit sick and then sleeping. Poor Michelle did not get much sleep last night while I slept like a baby in our bed. I love that woman so much!
The Day After Surgery
This morning I was not sure how things went last night. I had not heard overnight from Michelle but finally she messaged me that the sleep had been not great and we started getting ready to head back to hospital.
Taylor, still a little nauseated, and still in a fair bit of pain was getting a bit better as expected but now her face was getting swollen. Nephrology is checking drug interactions and possibilites as to why this is happening. Not sure if it is swollen lymph nodes, also thought about mumps (Taylor is of course vaccinated), but we are just keeping watch for now.
Ah, the doctor seemed to find what the swelling is. He found a study that showed that anasthesia can cause swelling in the Parotid glands for 2-3 days after surgery. Not common but for us it seems expected 🙂
Finally around noon Jaiden and I got back to the hospital and Taylor is doing better. She is very quiet this afternoon and sleeping more than she is awake for sure.
Tonight will be my shift overnight at the hospital. Hopefully things will be uneventful but we will see…
Today also the nurse came in and changed the dressing for the dialysis tube and although it was a little tender Taylor was pretty ok with it.
All in all things seem to be stabalizing pretty well. The nurses are manually doing the dialysis for now but we are hoping that Monday or Tuesday we will be changing to the automatic system with the dialysis machine instead.
Why a Nephrectomy Anyway?
I know I have to note why we seem to have a very strange method of doing a kidnet transplant so this is probably as good a place as any to mention how we came to this place.
Usually someone withe Kidney Disease will have their kidneys become less and less effective and let less and less liquids through. When the kidneys get below 10% or even 5% then the person will go on dialysis and the dialysis method will clean the blood and take the place of the kidneys.
Eventually a kidney transplant will take place and the third kidney is put in and the other two just stay there, not doing much on their own.
In Taylors case her kidneys filters are getting less and less able to clean the urea and other impurities but also htey are not regulating water at all well. This non-regulation of water means that she is peeing as much as she is drinking and getting more and more dehydrated until we end up in the hospital to rehydrate her.
So if we would have done a kidney transplant now Taylor would use my kidney to clean her blood and the other two crappy kidneys of hers would have still been draining her.
Our plan now is to just wait until Taylor heals from a lack of kidneys, do the dialysis at home overnight and then in 6 to 8 weeks she should be in a great place to take one of my kidneys.