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. 

Back again hanging out in the hospital.

Jack has had some minor pain urinating the last 24hrs. This morning the pain was getting worse, accompanied with some lower back pain, poop coming out with the urine and a temperature of 102.6. 

Called the doctor and he told us to come on up to the hospital for a CT scan. Wants a better look at what's going on in the lower abdomen area.

So, long story short, little dude has a small leak in the bladder. Not sure how or the details on all the plumbing down there, but it's related to the surgery. (And then the mess caused by removing the tumor and radiation.) 

So the plan for now is a folley cathadar for two weeks, letting the bladder heal on its own. Then another CT scan to see if the bladder is all healed up. 

I think just inpatient for 24hrs to keep an eye on him. Fluids running to get all that gunk out of the bladder, he's on an antibiotic, folley in place and ostomy still working good. 

Fingers crossed for a quiet night and no fever! 

Jacks quite the trooper with all this!! Sometimes light humor is needed to make us laugh. (Pic above)

 

And we're ...

Home

Tired

Cozy

Comfy

Stocked up on some good pain meds. 

And looking forward to a quiet long holiday weekend at home. 

Happy Thanksgiving! 

This just might be the shortest blog post ever. :) 

Quick update

Jack got his epidural and cathadar removed this morning. He was pretty freaked out, but toughed it out like a rock star. His nightly supplemental feeds went well last night at a slower rate, so all good there. Spiked a fever during the evening, but it stayed under control.

Still on morphine and Ibuprofen for pain, which seems to take care of it nicely.

Little dude got out of bed, dressed and sat in the recliner for most of the day.  

He said it felt good to wear clothes again. 

His 'plumbing' is all working good, so I'm learning the ins and outs of his new contraption.

He's eating some snack foods here and there, nothing too fancy. 

That's about all to report. He hasn't walked yet, I'm guessing that will be tomorrow. Not looking forward to that as he just might be a little owly. :) 

He's done awesome so far, very proud of him!