So, today we didn't have any big changes, but do know what the next steps will be...
First, on Wednesday, we will check in with the urologist. He will just check for any signs of infection (the catheter can cause it) and will schedule a cystoscopy for as soon as possible. The cystoscopy is just a procedure done in the operating room under general anesthesia where they will insert a scope to see the entire urethra and bladder. They will look for anything that they can repair and try to make a plan for repairing as necessary. Some minor repairs can be made using the cystoscope; others would require a separate surgery. Elijah may stay overnight at the hospital, depending on the time of day it is scheduled.
This seems like the least invasive way to understand more of what is happening and make a solid plan. The catheter will stay in at least until the cystoscopy and at that time, while Elijah is sedated, they may attempt to change it.
For now, I have rigged the catheter bag to be shorter by finding a smaller bag and folding it in half and securing both the top and bottom with a single elastic band. Hopefully this will make it easier for him to sit on his knees and move around without it disconnecting. I also covered the clip that holds it in place on his leg with co-band, to both cover it and secure it. Elijah was happy with the results and was thrilled to find it in orange - one of his favorite colors.
Our biggest challenge is keeping him still. Until today, I thought it was okay to let him run and play like normal. However, the nurse informed me (several times for emphasis) that if it snags and is pulled out, it would be extremely harmful. There is a balloon that holds the catheter in place. If it is pulled, the balloon is designed to NOT pop, so it would come out and destroy whatever is in its path. I am hoping to find some ways to keep him playing inside and without a lot of movement - trains, legos, coloring, etc.
Thank you again for all those praying for us!
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