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!

Surgery Update

Little dude had his surgery today and all went well. A planned three hour surgery turned into five hours, it's been quite the day! We're getting all settled this evening, need to unwind a bit. 

Jack has a pretty big incision, about six inches or so across his lower abdomen. The surgeon also placed a temporary ileostomy that will help healing where the colon and small intestine were reconnected. (About 6 weeks and then another surgery to reverse it.) We don't want leaking or anymore scar tissue down there! They also placed a epidural in his spine that's delivering some wonderful pain meds. A pretty cool IV also delivering some different pain meds and fluid. A catheter, so no need to hop out of bed to go to the bathroom. He's all sort of hooked up and sewn up this evening.  

Reassess pain on Monday when they take out the epidural and talk about plans to go home. 

Today we're thankful for:

- an awesome surgeon! Lots of risks came with this surgery and no organs were damaged.

- being up on the 6th floor and having our old oncology nurses. They were sure happy to see him again.

- I say Tibor, he'd say me. Sitting for five hours was tough today. We've made quite the team supporting each other through everything. 

Update and a surgery coming up.

It's been a bit since we gave an update on the little guy, so here it is.

Earlier this month, Jack had his sixth surgery/procedure to dilate his colon, hopping it would stay open. This was done every month, an in-patient procedure. Not too invasive, but nevertheless, he's put under, it's in an operating room and there is little bit of recovery, usually two days. A month or two ago, during the fifth surgery, the doctor placed a stent hopping this would help. Unsure if Jack would be able to tolerate it, it was worth a try. This was placed on Monday. By Friday, we were back in the OR having it removed.  That week was terrible! It took us two weeks to recover from that one week of pain, vomiting, and no sleep.

His last dilation was done a few weeks ago and after the surgery, the surgeon feels the next step is to preform a bowel resection. It's a pretty major procedure, snipping out the scarred part of his colon/tract, then reattaching the ends. Of course without damaging all the other organs around it. Jack has a lot of scar tissue around that area from both removing one the tumors and radiation treatment.

Surgery is this Friday at Children's in Omaha. This will be his eighteenth surgery! We're gonna be camped out in the hospital for a minimum of 4-5 days and then some home recovery time. Fingers crossed we'll be home for a quiet Thanksgiving.

Other than that, Jack is doing good. He's up to 48 pounds!! He's still thin, but is looking so much better. He's also grown two inches, in the last 4 months, 50 inches now.

Third grade is going good. I usually get a call from the nurse once or twice a week, Jack either needs some medicine or needs to come home because he's not feeling good. Some weeks are better than others. We just roll with it.
He had his nine month post treatment scans and labs at the end of September, everything came back clean. Next set are right before Christmas.

Pic - Jack and I having lunch together.  (They have tables set up in the preschool room, this isn't what his classroom looks like. <--- Jack said to put this blurb in. :) )

Happy Birthday Jack!

Well, tomorrow, the little guy turns 9, and he is very excited. 

He will open a few presents before school, and then we'll have cake and festivities after school. 

Otherwise, he's doing well, still not gaining much weight, but he doesn't seem to mind. 

His legs are getting stronger, and he can walk fair distance. 

My goal is to have him trick or treating this year. 

We had a great weekend, playing with cousins and even swimming a bit in a pool for his cousin's birthday party. 

No other news, he will have check up scans in the near future, but I don't think they're this week.