The Thomas Crew

The Thomas Crew

Thursday, April 3, 2014

Update on Kidney

It's been busy busy in the Thomas home. This week Gavin had some more testing done. He had a MRI, CT scan and a echo done. The specialist have been trying to put together all the missing pieces of Gavins medical problems. The records we received from Bulgaria are simple not complete or fully accurate. In order to fully understand Gavins future medical concerns we have to first determine what caused all these problems to begin with. Whether it is genetic or not has been a big question for the Genetic specialist. There is a lot of speculation of a few syndromes that could be the reason for Gavins problems but we wont know for sure until all the testing is back. Hopefully we get some answers to these questions to help us plan for the best future for Gavin. We are also in the process of planning another surgery for Gavin. He currently has a stent in his ureter. The stent device is supposed to be a temporary fix. But last time we removed the stent his kidney swelled and we had a 6 week hospital stay that followed. So instead of removing it the urologist will just continue to exchange it with a new one every few months. Gavin has been doing so well it's way past do to be exchanged. In January after we got back from Make-A-Wish we removed Gavin's leg catheter bag. I was pretty positive that this was going to cause his renal function to get worse but we had to give it a trial run and see how he would do. We have been so surprised to see him now 3 months later without the leg bag and actually doing better. He is now fully toilet trained except at night when we have to decompress the kidney. I wonder if he will continue to stabilize out for another 6 months? Only God knows what's in store for Gavin. Gavin's donor is still in the screening process. She is actually pretty far into it now. She will see the psychologist next week and then its time for all the scans. I think the scans are a hard part of this process. Many times it's when problems are identified that the donor had no idea about. As anxious as the entire process is, we have to continue to trust that everything will work out, exactly how it should be. I should knock on wood NOW but we have settled into a nice calm stretch. His first year home was one hospital stay after another. It's so nice to just have him home and stable!

1 comment:

  1. Thank you for sharing, I was wondering how things were going ... sending healing energy.