We spent the afternoon at CHOP. It was a long day because we had to treat him for mild croup 3 days ago... He had to get cleared by Anesthesia and it took over an hour before the anesthesiologist could get to us. He was such a good, calm, behaved, fun kid all day!! We told him everything that would be happening, and he handled it real well. The Cysto went well... no new strictures or obstructions had to be fixed. His bladder looked large but fine, but his ureters are HUGE... The dye never made it up to the kidneys bc they are so big!! We'll talk to the Dr. torrow about all of his lab results, but we saw that his creatnine was the lowest ever... 0.4 which is Normal!! And his BUN was 17. Jason is convinced that Jack is actually growing a new kidney himself, not that it was there the whole time and the Drs kept missing it. We are so pleased. He does have a supra public tube, but the Dr doesn't want it to drain all week, so it's in a dressing until we use it for Urodynamics next week.I'll update next week after all of his tests.
We bribed him with new Transformers.
His "Tough Guy Scar" before surgery
Jenni sent her pickle to the OR with him, though I don't think he remembers it since he was high off of Versed before surgery
Jack slept okay last night. But woke up in a lot of pain that he is unable to really describe to us. He says "my wiener hurts" but is grabbing his belly. Then he says "I can't pee because I have a tube in". But the tube is not inhibiting him being able to pee at all. I think emotionally he is exhausted, scared and nervous. I got to the pharmacy first thing this morning to get his to Ditropan and we had some Tylenol #3 in the cabinets that is helping him. He's napping now, after we took a long walk this morning.
*****
9/10 night
We had somewhat of a rough post op day #1. This evening we were nervous that there was an infection brewing bc he was irritable, screaming in pain every 10mins saying that he had to pee but couldn't, his urine was more bloody, he refused to eat or drink anything, and his face was so flushed (99.8'). After talking with CHOP, it's probably bladder spasms that he is experiencing. We got the go-ahead to drain his bladder via the tube if he's unable to go. The Ditropan and Tylenol #3 are in full effect right now, and I think we'll make it thru the night just fine. Mandy brought us Greek manicotti... Delicious!!
*****
9/11 night
Post Op Day #2... what a day! We thought he was having fevers b/c he was so flushed in the face and thermometer read 100.4 Temporal. Turns out, it is probably a side effect of his Ditropan med. He also randomly threw up twice today. He still has no desire to eat or drink. I talked to CHOP a few times and we saw his Ped. to get a culture sent, just in case. We drained his tube once early this morning b/c he was screaming that he couldn't pee... again. We only got out 20 cc though. Now he is being treated as if he has an infection... tube is being left open and he is on a new antibiotic. Look how flushed he gets...
****
September 15, 2014 5pm
OK, once we opened his tube to drain, he was less uncomfortable with spasms and we stopped the Ditropan. He was VERY anxious/ worried about his tube at all times (even having nightmares about it)... "I can't walk bc I have a tube." "I can't sit bc I have a tube!!" Diaper changes were a nightmare bc of fear, one of us would have to hold him down while the other changed him (we weren't ever messing with the tube.). He even pooped in his diaper all week even though he's potty trained. Jason stuck an "Army Ranger Dressing" over the tube Saturday which helped some. We were very nervous about going for his tests today.
EMLA cream on his hands, Dino distraction by Daddy...
Mag 3...
First was the Mag 3 (Nuc Med test)... They got his IV on the 2nd stick and hooked his urine tube up to a drain bag. It literally took 60 mins to do and he had lay still, strapped down for all of them... He did great for 47 of them... Then his bladder was so full from the IV fluids and Lasix and his tube was barely draining... We could see on the screen how huge his bladder was but he "couldn't" pee... Not sure how much physical and how much was psych... After SCREAMING for 25 minutes, he let loose and peed and peed... out of his diaper and all over Jason!
The results show his right kidney only does 30% of the work, while his left (single, not duplicated) kidney is compensating by doing 70%... Ideally it would be 50/50.
VUDS
Then he had Video Uro Dymamics done... Bad, but really not terrible. He again got to lay and watch a movie with Jason. They hooked up to his urine tube to measure the pressures in his bladder and a tiny rectal probe was used. They slowly filled his bladder to hold appx 130cc. BUT... His real bladder only held a small amt before it all spilled into a divereticulum,
which ended up holding more then his real bladder. He was very uncomfortable before he would pee. He kept saying he couldn't pee, but again we're not sure with the tube in him what is real and what isn't. When he peed, he emptied the divereticulum completely and stopped, like he didn't know he still had more to pee out. After we forced him to pee again, he pretty much emptied all the way.
http://www.urologyhealth.org/urology/index.cfm?article=111
Bladder Diverticulum (He has only 1)
Good news, bad news, a little news, more news than we had...The results are not near as much as I was hoping for. We still don't know why his ultrasound looks so horrible all of a sudden, but I guess we'll just never know We were told to continue the daily antibiotics and if he continues to get UTIs then the next step would be surgical... Fixing the diverticulum or messing with the ureters (which every surgeon has told us is not something they jump into.). So for now, we continue with our daily antibiotic and follow up in three months for an ultrasound and to see the doctor. We also see the nephrologist in about a month. At least we have a plan going out from here...
