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| Peace out MUSC (at least for the year!) |
Gabby had a blood draw, renal ultrasound and urodynamic study done Wednesday morning. The urodynamic study was a new test for us. Gabby was very worried about it because she had never had one, turns out it wasn't very bad at all. They took us in a surgical room filled with an x-ray machine and table, lots of computer screens and some type of automated pump. The basically put a catheter in her mittrofanoff and also one in her colostomy stoma. The catheter in her mitt is hooked up to the automated pump that pumped what I assume is saline (forgive me I didn't ask) into her bladder. While the machine is pumping the nurse watches several computers reading how much volume is being pumped and at what rate it is going in. Dr. Alam had his own computer that he was watching. The x-ray was mobile and positioned above and below Gabby while she was being entertained by a sweet child life specialist. Every 5 minutes or so Dr. Alam would call out x-ray and a new image would pop up on another computer screen with an image of Gabby's bladder that Dr. Alam and Dr. Hyler (one of the urology fellows) would look at. This went on for around an 45 minutes or so. Eventually, her bladder reached an amount of 180 cc. The purpose for this test was for a few reasons. 1) to check how much her bladder can hold 2) how big her bladder is. 3) to make sure that her bladder didn't have any leaks. It was extremely laid back the whole time. We talked about Gabby and our home routine along with talking about how ridiculous and Top Gun sequel is at this point in Tom Cruise's life. :) Once the study was over he removed the supra pubic drain and said that the hole left should be gone in a day or two. After that she had her ultrasound and then blood drawn. Once we finished up there we headed upstairs to meet with Dr. Alam and then a nutritionist. During our meeting with him, he kept going on and on about how happy he was with the results of Gabby's surgery. He said pending in complications we won't have to go to Charleston until next summer for a follow up that will probably include another urodynamic study and possibly a cystoscopy of her bladder. We are to continue cathing her every 3 to 4 hours along with continuing her nightly Gentamicin antibiotic bladder flushes to help keep her bladder healthy and keep infections away.
While we were there I did take the opportunity to ask him about kidney disease. I have a private facebook group that I read almost weekly about different kids and their problems with kidney disease. After reading about it so frequently, I had to ask Dr. Alam why the subject has never come up with Gabby in the last 9 years. From his opinion in Gabby's case she has been very fortunate not to develop kidney disease as of yet. Kidney disease can develop due to many reasons but in most of these OEIS kids it tends to be because of reflux of urine back into the kidneys causing chronic infections. While Gabby does carry streptococcus bacteria in bladder all the time using the Gentamicin keeps it from overgrowing into her kidneys. We are also going to add a probiotic to help keep it at bay also. This doesn't mean that she can't develop kidney disease in the future but as long as we keep on the same path and stay vigilant it should definitely help prevent the development of kidney disease for a while at least.
Dr. Alam also had us meet with a nutritionist. Gabby's weight has been a concern for quite sometime now... well at least the last 6 years. When she was hospitalized for surgery in 2013 they tried doing NG feeds with Pediasure and Pedialyte but unfortunately her little belly just couldn't handle it. She would sit hooked up a machine for hours only to vomit it all up, we weren't getting anywhere. I did really enjoy talking to this nutritionist. She definitely understood that kids on the general don't have the best diets and gave us some tips that we can try at home. She also wants to add daily multivitamin, vitamin D, fish oil and multi mineral complex to Gabby's daily list of things to take. It sounds like a lot but if it will help her not have to do NG feeds I'm totally game.
We will have do to do ultrasounds through out the next year but those can be done locally and then the images will be sent to Dr. Alam to review. The biggest and most exciting news that Gabby received was that she could go swimming whenever she is ready!
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| Home sweet home |
