1 Month Post Hospital Release

Sorry for the long delay between posts. Life/Work has been CRAAAZZZYYYY! I have been working a lot of late hours.

So here is an update:

2 weeks post release: We went to visit Dr. Wallis to get the final tube and bag removed from his stoma. Well Dr. Wallis removed the tube. Then tried to put a regular catheter into the stoma hole. He tried for about 20-25 minutes and could not get the catheter to go in. He tried several different types but none would work. He thought there might be a kink or twist in the stoma tubing going to his bladder.

So he sent us downstairs to imaging (fluoroscopy) to see if they could use a dye to see where the catheters were getting hung up between the stoma opening and the bladder. Well, it was not as easy as it sounds. It took 1 hour to finally get a catheter into his bladder through the stoma! We left that tube in so his stoma could heal for another 10 days or so before removing it again.

One good thing about this visit, no more bag. He can just catheterize norally through his penis for now until we figure out why the newly created stoma is not working properly.

During this time Grayson also had been experiencing abnormal headaches. Usually this mean his ventricular shunt is malfunctioning. We had it checked and the valve setting was not right, so they adjusted it to the correct setting.

10 days after last visit: Dr. Wallis took the catheter tubing put in by the imaging Dr. two weeks ago, then tried once more to get a catheter into the stoma. This time he was able to get it into the bladder, the first time, but the second or subsequent times we could not do so! However, it does go it quite a ways, unlike 10 days ago, we could not even get it past the opening of the stoma.

So, Dr. Wallis sent us home with some special catheters and asked us to keep trying and see if we can be successful with it at some point, then let him know how it goes. Well, despite trying for multiple days in a row, we have not been successful in getting a catheter into the stoma. Dr. Wallis said if we were not successful he would probably put a camera down the stoma and see what is causing the catheters to get tripped up. It looks at this point this will be what will need to happen.

At this last visit, it was actually 2 days in a row of visits because we messed up on appt. dates :-), we had them check his shunt again. It was at the appropriate settings and he had not had a headache for the last 2 days. So far his shunt seems to be working normally. Yeah!

Grayson is free to do any activity he feels up to doing. As I right this he is in the spa playing with his brother Bryson. Grayson is close to having his full strength back and is aching to go and do things.

We are still struggling to get his bowel movements back on schedule but that always happens after surgery. Also, at first, Grayson did not even want to look at his stoma. Now he tells me he looks at it as much as he can to get used to it. He is a cute, and brave boy.

Please continue to pray that his Doctors will be able to help us figure out his stoma issues. Thank you all for worrying about him, praying for him, and loving him.