Only when I have to get up and get us out rhe door is this kid OUT. He's pretty much never OUT. You can't move him. Set him down. Sneeze. Bump a box. He wakes at everything.
It was 730, he's normally up between 6 and 7. I took his boots off. He barely noticed, just stretched out some. I hated to wake him and was even a bit annoyed that I could have been catching a little more sleep! (Spot on shirt is not blood, it's his meds that dripped at bedtime.)
Random, super pretty building at a corner in Ann Arbor.
Happy, smiley boy slept the whole 90 min drive...after sleep in until 730. And was well-refreshed when we got there.
His bladder and ureters are still enormous. She actually has to swap out transducers to be able to get the whole bladder in one shot. And that was after 2 wet diapers!
So the plan is surgery February 15th to reconstructive ureters and do an abdominoplasty. They will removed half to 2/3 of this uereters, taper them to be the proper width, and then reimplant them into the bladder properly. The hope is that this will eliminate the reflux to the kidneys and the the standing fluid in the ureters.
He was mildly interested in the minion movie that was on.
Then we had his VCUG. That was awful. He had to be immobilized on a board. He had towels all over with a blue and white velcro strap to secure each.I wanted a picture just because the one on his head made him look just like mother Teresa! Good reminder to pray.
He screamed for the whole procedure. They filled 300cc into his bladder and then watched the reflux unto the kidneys. Which was bilateral. And then they waited for him to void. But he doesn't void while lying down. I warned them of this. Eventually, they had us get him upright and he finally went fate maybe 10 minutes. They did some more imaging (minus the board and straps) and then wanted to see the ureters drain more. We waited for a wet diaper, which showed the bladder less full (but not empty) but ureters still severely distended. We watched another 15 but the imaging didn't improve so they let us go. He was quite upset through all of that mess. It's the hardest thing, feeling like you're torturing or letting someone else torture your kid. Of note, he wasn't in any pain, he just didn't want to be strapped down.
Then we went up to meet with his urologist. He was still not happy.
The abdominoplasty will bring his stomach muscles together and remove excess skin, very similar to a tummy tuck. This is the part that we know will need to be done eventually but we weren't sure it was best to be done now. However, because of the involvement of the ureter reconstruction, they would be opening him up pretty drastically anyway and doing this now just gives them better access. It isn't significantly more involved.
So, 5-7 days recovery inpatient with a day or two in the ICU. The length of the surgery means he'll need to be weaned from the sedation and intubation, hence the ICU. I'm kinda nervous about a week in a hospital with a 13 month old. He isn't going to be cool with tubes and wires. Or sleeping in a crib alone. One or two days may be tolerable, but a week? I guess if he feels pretty badly he may just sleep for most of it. Something I plan to ask the PBS group about.
Pray for us. Pray for him. Pray for his medical team. Wisdom, patience, good decision making. And maybe some progress on good before then?! I'm not thinking plain bison is served at the cafeteria...
This face breaks my heart. He was exhausted. He fell asleep immediately in the car and slept not only the whole way home, but for another hour In the driveway. Mama took a bit of a nap in the driveway, too, until Dad came knocking on the window 10 min in. Probably a bit concerned , I get it.
That nap did wonders. He was back to his old self!
And very happy to see his best buddy who never takes him to the awful places.
We thank everyone for the prayers. He's truly doing so awesome and we are so grateful. We know this surgery is in his best interest and just want it to go as smoothly as possible!
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