No we weren’t trying to recreate the famous Tom Cruise pantless dance scene, I was actually trying to get a “clean catch” urine sample from Elsie. Which was indeed risky business. We were at the renal clinic on Monday and her recent urine test came back with a large amount of white blood cells in it so they suspected she had a urinary tract infection. Since we’ve been using a bag to collect her urine there is a higher risk of cross contamination so they wanted us to try get a clean catch. So after letting her run around naked for a half hour with no pee I decided to recreate the last time she peed all over the place which was standing beside the tub with the water running. Sure enough after a couple of minutes we had success! And it turns out she does have an infection so for the next 10 days there’s another medication to add to her daily routine.
Her most recent blood test came back showing that her electrolytes are still really good! She’s also gained some more weight and grown a little bit! Before diagnosis Elsie was not even on the growth charts but now I’m happy to report she’s in the 0.1 percentile for both height and weight. I know that may not sound like a good thing but when you’re constantly worried about whether or not your child is eating or growing enough finding out she’s finally back on the growth chart that all medical professionals use to measure health for children is huge.
However Elsie is dehydrated and our nephrologist says that she should be taking in about 1.5 litres of fluid per day due to Fanconi’s Syndrome and everything that she is losing through her kidneys. Currently she gets about 750ml and I just don’t know how we can get anymore into her. So they are recommending Elsie get a gastrostomy tube (g-tube), which is a feeding tube that goes directly to her stomach through her abdomen. After meeting more parents and families affected by cystinosis I’ve learned that a g-tube is very common and every parent I’ve talked to says it is one of the best decisions they’ve ever made for their child. The tube will allow us to get all the nutrition, fluids and medication into her that she needs even if she is not physically able to swallow it. And it would let us give her, her 1 am dose without having to wake her up.
Knowing all of these positive things that the g-tube can bring to our family I am still having a hard time accepting it. The thought of putting Elsie through surgery, having her stay in the hospital, and seeing her hooked up to medical devices is almost unbearable. I wish so much that my little girl didn’t have to go through this. Many people in the cystinosis community have commented that often times, especially in the early years, this disease is harder on the parents than the children. And I think it’s so true. Elsie is still a very happy girl, despite having to take tons of medication, and usually 10 seconds after throwing up she’s bounced right back and is happily playing while I’m the one still left worrying if she’s okay.
I’ve been told many times that the first year after diagnosis is the hardest and I really feel like if we can get through this upcoming year we’ll be able to get through anything. Luckily we have so much support from friends, family and the cystinosis community that I have no doubt we will get through this and be a better, stronger family because of it.