Updates on Rilynn
Tomorrow Rilynn turns 7 months old, since coming home life has seemed to fly by and she is learning and developing so much. Last week we had multiple appointments in Ann Arbor, some good news and some bad. For those of you who dont know, Rilynn had failed her hearing tests, both at her newborn screening and at her 3 month scan, well she finally past it! I always knew she could hear by the way she turns when someone talks, even when the dogs walk across the hardwood floors she turns to find them... just happy to finally have the doctors stop harassing me about it.
After we met with audiology, we headed to our monthly nephrology clinic. Rilynn's labs all looked stable. She gets blood draws monthly to check multiple items: Electrolytes: Your kidneys measure out chemicals like sodium, phosphorus, and potassium and release them back to the blood to return to the body. The right balance has to be supplemented daily for Rilynn because excess levels can be harmful.
Blood count: Your kidneys release a hormone called Erythropoietin which stimulates the bones to make red blood cells. Rilynn typically has a low red blood count, making her anemic, causing sleepiness and exhaustion. Three times a week we give her a shot of epo to help her body to create those cells. The good news this month was that her red blood count was higher than they would like and we don't have to give shots for a couple weeks!! Best gift you could ever give me.
Vitamin D: The kidneys produce the active form of vitamin D, which helps maintain calcium for bones and for normal chemical balance in the body. Its very common for people with kidney disease to have weak bones and we supplement Rilynn with a few different medications to help keep hers strong.
Twice a day we do vitals which include checking her temperature, blood pressure, and weight. Anyone on peritoneal dialysis is susceptible to infection, there is a strict procedure for setting up her machine sterility, using masks and gloves. Dressing changes a few times a week over the incision site that the catheter comes out of her belly to insure no infection begins in the tunnel of the catheter. One sign of infection is a fever so that is why we check it twice daily. Blood pressure is checked because your kidneys produce Renin, which regulates blood pressure. Rilynn isn't currently on any blood pressure medication but we control her pressures by monitoring her fluids. Dialysis removes the fluids from her body, if too much is taken she can become dehydrated, but if not enough is taken she will have too much fluid on her. This is Rilynn's only mean to remove those wastes since she doesn't urinate, so it is very important to keep track of her fluids. We also check Rilynn's weight before and after dialysis to see how much fluid is being pulled off of her. Once she weighs 22 pounds she will be eligible for a transplant (and also receives all of her first year vaccinations). Today she is almost 18 pounds! We are getting so close to reaching the goal and I was told that in 3 months we will begin the process for transplant.
Our last appointment was with orthopedics. Rilynn has had a dislocated hip since birth and we tried multiple harnesses while in the hospital to correct it, Nothing has worked and we were told she will have to have surgery to correct it. They will have to wait until after she receives her transplant because she will wear a body cast for weeks and it would cover her catheter for dialysis if we did it now. This was not the news we were hoping for but in the grand scheme of things, it is minor compared to all we have gone through. Having a 1 year old in a body suit is gonna be interesting, poor girl!
We go back up to the hospital this thursday for Rilynns 5th surgery. She will be getting a G tube, instead of using the feeding tube in her nose. As she has gotten older she pulls that tube out daily and the trauma of putting it back in constantly is not worth it. She is eating baby food by mouth now and loves it but she will not take her formula. Added to the formula is medications and the taste is very salty, plus she had a period of vomiting up her feedings and I believe she correlates the taste to bad memories. After transplant she should regain an appetite (not having kidneys can make your appetite nonexistent) but will have a very high water intake she will have to maintain. Most transplanted kids receive water through their G tube overnight to help them reach their goals. The struggle to get a toddler to keep up with the water requirement makes having a G tube a huge asset. I struggled with the idea of going through surgery yet again when we could continue to use her NG tube through her nose, but knowing it is going to be used long term has made it seem like the better option.
While in the OR the surgeon will also be fixing her broviac. A broviac is a central line to draw blood, we use this so she doesn't have to be poked for blood work since it is so frequently. This will be the second time hers has quit working now and weve been going back and forth deciding if we should continue to use it or have her blood draw regularly. Since she is already going to surgery we figure we will get it fixed one last time. This will be are first time back inpatient at the hospital and I just know its gonna flood back all the feelings from when we almost lost her. Everyone's prayers for a quick recovery and peace for Rilynn, Zack and I would be appreciated.