Friday, December 25, 2015

Merry Christmas!

A quick update on the little dude.
He's enjoying some time off from school. In the past couple of weeks, he went to school mostly half days, though he did power through a few full days. All of his little gadgets are working good. His urine is still pretty cloudy and full of mucas, so I'm guessing the fistula (hole) is still there. 
He goes in for a scope procedure on Monday to how things are looking. 
Other than that, it's pretty quiet around the house. Traveling this weekend to visit Tibor's family, and mine (Sarah's) next weekend. 
The whole family went and saw Star Wars last Thursday (premiere night). 
Awesome! We give it 9.5/10 stars! 

Wednesday, December 2, 2015

Home (again)

Yay, we're home and plan on staying!! 
We'll declare this week our holiday long weekend since Thanksgiving was a no go. Phew, been in the hospital a total of 9 out of the past 11 days. 

Not too much to report on the little dude.  Three contraptions in/on his little body so he has some maintenance going on. 
Follow up with surgery next Tuesday. 
Recording all his daily intake and output- goal is 60mls (2oz) an hour for input-- gotta keep him hydrated. Water has been replaced with Gatorade to make sure he gets extra sodium and electro lights. 
Looking forward to our own beds, no beeping machines or vitals taken all the time. We do have to watch for fevers similar to when we were going through treatment. Nothing over 101F. 

This is our third year getting a pic taken in front of the beautiful Christmas tree in the lobby and now we're up to 20 surgery bears. It's gonna be a little bit of a bumpy road the next few months, but we'll get through it. Jack has such a positive attitude, he's quite amazing.  

Tuesday, December 1, 2015

Getting closer to going home

Still in the hospital. Little dude has a bladder rectal fistula about 1cm around. The tissue in the lower pelvic area is damaged from all the radiation and after surgery, the tissue broke apart and created a hole inbetween the bladder and rectum. Poo and urine starting mixing and coming out of the wrong ends and hello infection. They placed a folley cathadar on Friday and then he has the ileostomy to keep things somewhat clean down there. He's on an antibiotic and a medicine that reduces bladder spasms. Yesterday the doctor went in with a scope to get a better look and do some light housecleaning in the rectum. 

Surgery isn't an option now because the tissue isn't healthy enough to hold any sort of stitches or repair work. 
This sort of fistula isn't that common in kids, so Urology has consulted the UN Med Center for some input. The plan for now is to keep the folley in and scope again forwards the end of December to see how/if things are healing on their own. 
Taking this month by month and making decisions based on what they see. 

So today, off IV fluid and switching over to oral antibiotics. 
If Jack doesn't get a fever today, we get to leave Wednesday. 
Fingers crossed.