Saturday, June 4, 2016

Resting after Surgery

^^^ Mr. Froggy has been with Jack through every surgery, procedure and hospital stay. He and Jack are best buddies. 

Sorry for a little delay in the updates. Been a rough few days for the little dude. X-ray found a kink/blockage in the intestines. (Which explains the nausea and vomiting.) 
The blockage must of happened during the last surgery when a piece of omentum was pulled down and used as a cushion between the colon and bladder. 
Our doctor wanted to try draining the stomach in hopes of the bowel reversing itself, tricking it in a way. In order to do this, Jack has been getting all his nutrition through TPN. (IV Food) 
Doctor gave this three days, taking X-rays daily checking to see if there were any changes.
Negatives on fixing itself. :( 

Jack went in for another surgery this morning (laparoscopic- four little incisions) fixing the kinked intestine. Only a minimal amount of damage was done to the intestine wall and the surgeon feels it should repair itself.
Jack will continue the TPN for a day or two, allowing the intestine to heal. Then switching him over to real food, making sure he's able to eat, digest and poop everything without nausea or vomiting. 
I'm guessing we'll being staying in our Children's hotel suite until Tuesday or Wednesday. 

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. 

Wednesday, April 20, 2016

Spring Update

Long time, no see.
Huge apologies to all, we've been busy enjoying school and spring and no hospital visits, so didn't get to blog much lately. 

Currently, Jack is finishing up a bout with flu (influenza A), and as you may expect, hasn't eaten a proper meal in about a week. He gets his nightly feedings, but he's certainly not gaining any weight. 
He was 46.5 lbs a week ago, before the flu really hit. 
Three years ago, he was clocking in at 47lbs, so...

But, he's doing fine otherwise. He's in good spirits and has fun at school. 
Still has the illiostomy, hopefully only till the end of summer, but it's not a big deal, and doesn't keep him from doing anything. 

Here's a recent portrait he took at school, and I swear we'll buy the portrait package this time!