For those not on FB, I'm sorry I wasn't able to get on here yesterday and update. I wasn't able to post much even on FB so I wanted to put it all together in one place here.
This past Tuesday (4 days ago) Noah got a new supra-pubic catheter. There haven't been any sorts of complications and we'd gone back to normal life. Yesterday morning at 3:00, Noah woke up saying that his bed was "a little bit wet." Jeff figured that some tube had leaked just a little and volunteered to get up and check it out. We figured we'd put a big cloth waterproof pad under Noah and deal with changing his sheets in the morning.
Within 2 minutes Jeff was back in the bedroom saying that Noah's supra pubic catheter was completely out. This catheter is a very large silicone tube that has a balloon wrapped around the end. There is a little port on the side of the tube where you can either inflate the balloon with saline or deflate the balloon by drawing the saline out. The tube is inserted through an incision in the abdomen and into an incision in the bladder, then the balloon is inflated to hold the tube securely in place. I immediately hooked up some saline to see if the balloon would reinflate but when I pushed the saline it was obvious that the entire balloon had broken inside Noah's bladder. It was also obvious that the stoma (hole) leading into Noah's bladder was closed and there was no way for me to get any kind of tube into it.
We gave Noah a sponge bath and changed his bed then called our urologist. Since Noah's stoma was closed, there was no huge emergency and he said to head to the hospital mid-morning. We had to hold off all of Noah's I.V. lasix doses. This drug pulls fluid off Noah and causes him to make urine. Giving it when he had no good way to urinate was dangerous and unkind, but holding the doses (he gets it every 6 hours around the clock) also put him at risk for fluid settling in his lungs or other tissues.
Naturally (because these things can never go smoothly), our bus was across town at the shop. Jeff called the mechanic as soon as they opened and told them not to start any work because he'd need to come pick it up. (They were going to start their one final attempt to get the AC working - a bandaid, NOT a true fix, but something to buy us a little time to raise the money to replace the bus.) We were so very, very thankful that the doctor had not suggested that we come to the E.R. at 3 that morning as we wouldn't have been able to get the bus out of the locked enclosure!!
We got to pre-op about noon. Yesterday was extremely hot (heat index in the mid 90's) with lots of scattered thunderstorms. The hot drive was very difficult on Noah but prayers were answered in that in never rained while we were driving so we were able to keep the driver-side window open for at least a little ventilation.
Since this was emergency surgery, we had to wait for an O.R. slot to open. A little after 5 PM we were told that it would be at LEAST an hour and a half and that outpatient pre-op was closing for the day. We put out a plea for prayers on FB and they were just about to move Noah to inpatient recovery to wait when the nurse came dashing in to say that something had just opened and that she would wait until he went back. We were SO thankful - Noah was very tired, bored, and uncomfortable but at least he had a TV and tons of toys in pediatric pre-op. Post op would have just been a curtained cubicle and it would have made the waiting harder for everyone.
Because Noah's stoma had closed, this was a much more involved procedure than his usual catheter change. Our wonderful urologist was able to find the teensiest bit of an opening that allowed him to use the same tract and just reopen it surgically. This means that there are less potential post-operative complications and the healing will be faster. He did have to place a very small "starter size" catheter and as the tract heals, he'll dilate it and move Noah back to the huge size we generally use. We need ongoing prayer that the catheter will not clog up - the entire reason he has such a massive tube is that we've had several emergency tube changes due to clogged tubes. There is a piece missing from the broken balloon. Dr. T could not see it when he scoped Noah's bladder, but the balloon is transparent and a small piece could be nearly impossible to find. Please pray that we don't "find" it by having it clog up his catheter!!
Several people asked about just giving Noah a regular catheter to tide him over. While Noah cannot voluntarily urinate, his bladder will release on its own once it is very full (600-1,000+ cc's, or up to a liter or more of fluid!!) It is unbelievably difficult for even the most experienced people to cath Noah. He has severe bladder spasms in spite of daily meds, and as soon as a catheter is introduced at all, his bladder goes nuts and his urethra literally clamps shut before the catheter is in place. It can take up to 2 hours to get one in place and we weren't about to put him through so much trauma unless his belly pain became unbearable. His bladder did release a couple of times between 3 AM and his surgery last evening, so even though his tummy was sore/uncomfortable, it never reached the point where the cathing procedure would have been an improvement.
Noah always sleeps for hours in recovery, but last night he woke up less than 5 minutes after I walked in. The downside to this is that he woke up absolutely miserable - hurting, retching, groggy, confused, etc. We had a new-to-us anesthesiologist and I forgot to emphasize NO TAPE on Noah's face unless it is our special blue tape from home. They seemed to have had a field day with the tape because there were angry red abraded places all over his little face and that discomfort just added to his misery as he was uncomfortable on his back but it hurt to put his cheek on his pillow.
The upside to his waking so quickly is that we were able to leave fairly quickly. There was talk of keeping him overnight, but when he woke up so rapidly it became apparent that we could manage his pain/nausea better and faster at home. It takes several hours to get a child admitted, meet with the residents and then the attendings, get prescriptions in the system and then finally brought up from the pharmacy. God was gracious in that Noah only missed a single dose of medication and we rolled into the house just in time for his many 11PM meds. We have a plus or minus 1 hour window for meds to be given and we were able to give his meds on the early side.
He was incredibly pitiful and miserable last night but I'd push or hang meds as fast as Jeff could fix them. We had a hard time getting out ahead of the retching and the pain and even though Noah was exhausted, he was to miserable to sleep. General anesthesia is very hard on children with mito and he was at a huge disadvantage due to the heat, the lack of sleep the night before, and the fact that he'd just had general anesthesia about 72 hours before. I finally climbed into bed with him and snuggled him for the longest time until he was able to fall asleep deeply.
Noah looks and feels much better this morning. He isn't exactly perky, but he's awake and playing on his iPad peacefully. His face is looking much better and we've finally gotten the retching and nausea back under control. Jeff just took the bus back to the shop - please pray for this "band aid" to work and to continue working until the Lord opens the door for us to replace the bus (and of course for the bus to continue to be SAFE until that point!!).
On top of the answered prayers from yesterday, I have one other big reason to give thanks - today is Jeff's and my 22nd wedding anniversary!! I'm not sure where those 22 years have gone but I'm so glad to have spent them with him.
Blessings,
Kate
