Tuesday, May 31, 2016

Quick Update


Discharged on Sunday afternoon and back Tuesday morning. Little dude super nauseous, dehydrated and not tolerating/keeping down anything. Took an X-Ray of his stomach and labs earlier today, will do another set of X-rays tomorrow morning. Draining out all nasty bile out of his stomach through his G-button and diet for today as been ice chips. Really don't know exactly what is going on, hopefully more answers tomorrow.

Wednesday, May 25, 2016

Surgery Bear #25

(Jack studying the drawing Dr. A drew on his bed sheet detailing the surgery plan.)

A seven hour surgery down in the books today. All smooth sailing - bladder fistula repaired, colon reconstructed again and some omentum pulled down from around the stomach area and placed as a cushion between the bladder and colon. (The original plan was to take a muscle from the inside of the thigh and use that as the cushion. Surgeon was very happy omentum membrane was healthy. One less incision. Faster recovery.) 
They reopened scar from last surgery (8in across the lower stomach) and did all the repair work. Jack is hooked up to some good pain meds tonight. A folley still in place to give the bladder some resting time. All in all, he looks pretty good for quite the exciting day. Hanging out on the sixth floor with all our favorite nurses probably until Saturday. 

An oncology update -- we still go in every three months for CT scans, lab work and urine marker tests keeping a close eye on the Neuroblastoma staying away. Jacks appointment at the end of April was clear and clean. Hooray! Yahoo! Always a relief. 

Tonight I'm thankful for:
- successful surgery. 
- Jack being in such good spirits through all this.
- Tibor and I passing the long day together laughing. It's not easy sitting and waiting and waiting. 
- All our family and friends thinking out the little dude and sending positive thoughts his way. 

Monday, May 23, 2016

Third grade walking field trip

Ok, 3rd grade is in the books!
To finish of the year, Jack's grade had a walking field trip around downtown Lincoln. 
It was awesome, and he managed to walk the whole time. (Honestly, it was a lot of walking...)
Here are some pics. 


While we were visiting Governor's mansion, he asked the staff if they ever greet the Governor with 'Ello Gov'na (Hello Governer, in a British accent). That created a good round of laughter. 

We have a surgery coming up on Wednesday. They will go in to repair his bladder, and clean up scar tissue around colon. It will be a 3-5 day stay, so hoping to be out by Sunday. 

We're still grateful for good things:)
Let's see,
- Holiday on Monday,
- Awesome memory creating field trip,
- Jack's friends, and cousins who keep him active
- He's finally starting to eat a bit better.  He has new food for his nightly feeds, and it seems to be working better.