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.

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. 

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. 

Spring Update

Hello, 

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!

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! 

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.  

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.