Well, we're nearly a week into this current admission, and I can say that this nephrectomy experience so far has not been nearly as scary as I thought. We arrived late Monday night and Preston went into surgery around 10:30am on Tuesday morning. The hardest part was kissing him goodbye as he went into surgery and then waiting for the long 5 hours until we were notified that he was in recovery. He did great in surgery. The surgeon was impressed by his tissues and promptly came out to give us the details of the surgery. He took a picture of his kidneys after they were removed and shared them with us. One of the surgeons before surgery stated that she expected the kidneys to be smaller than a healthy child's and really light in color; however the reality was that they were actually about twice the size of a healthy kidney for a child his age. I'm sorry if you're grossed out by this, but I'm more so documenting this for my own purposes because I intend to print this blog later for our own purposes.
After surgery, his stats were stable, he was extubated immediately and went over to the PICU. We were greeted by the entire team of doctors, surgeons, transplant coordinator, nurses, etc and they were all very positive and happy. It was a nice feeling to know we had a great team who all came to see him post op to see the progress and to immediately cheer us on.
Later that evening we started our first round of Peritoneal dialysis (PD). To explain the dialysis process, as I understand it, water with dextrose is pumped into the peritoneal cavity. Once there it sits for a period of time so that the fluid in his body can gravitate toward the sugar and fluid. Once that extra fluid is drawn to the PD fluid, it is then reversed and allowed to be flushed out of his body. Without kidneys, Preston's body cannot rid his fluid intake out on his own. What does that mean exactly? It means he doesn't create urine and cannot pee like a normal person. It has been very weird this week having dry diapers. A little sad, but also interesting to learn the science behind PD as well. One thing I now understand is why other parents who have babies that have been recently transplanted are so dang excited to see a little (or a lot of) pee pee post transplant. I can hardly wait for the day that Preston is able to make a super wet diaper. I'm sure there will be a happy pee pee dance (done by me) and pictures involved.
The initial process is hardly fun. He is on the PD 24hrs a day right now. The tube that goes into his abdomen is still healing so we can't hold him right now until it heals a little more. They are using the catheter already at a very low volume until it is able to heal more and then they can increase slowly the amount of fluid that can go into his peritoneum. He's right now doing cycles of 50ml (nearly 2oz) in, it sits for 20 minutes and then drains out for 5 minutes. So he is flushed in and out twice an hour, 48 cycles a day. They are increasing his volume by 5ml daily and this helps to slowly build room/tolerance in his abdomen area for more fluid. It's kind of like being sick for a long time. You don't have a huge steak and lobster dinner right after the flu, you slowly start eating maybe mashed potatoes and jello until you feel good enough to have more....same concept.
Once he is "ramped up" to 110ml per cycle, he will be able to use a machine called a cycler, and then eventually not be on the machine for a 24hr nonstop cycle. He will however need dialysis around 12 or more hours everyday. It will likely be overnight because he'll need to be tethered to a machine. Suddenly Preston's albumin infusions that were 2oz over 4hrs three times a week looks like a pretty easy routine.
I apologize if this is too technical or too much information, but I've recently been contacted by many other parents that have children with CNS that have found my blog by google-ing "Congenital Nephrotic Syndrome". I'm thrilled that I've been able to help others with the blog so they know what they might expect, even if it is just so that they may know that they're not alone in their journey, and that there is and will be a light at the end of this very long tunnel. I was going to say there would be a rainbow following the pee pee showers post transplant, lol. Oh, how I keep a sense of humor through this is beyond me....