CIC in a childcare environment for a 3 year old?

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This is likely a long shot since this is a pretty niche issue...

Our 3yo boy was diagnosed with Ewing's Sarcoma in September of last year. The tumor grew in/on his spinal cord in the S2 area. Due to the tumor's growth, they had to excise a little bit of his S2 in order to ensure the tumor wasn't putting pressure on the rest of his spinal cord.

We recently visited a urologist and testing showed that he isn't voiding completely and he also has a tiny bit of urine in his kidneys (I think that's what it is?). The urologist said it was minor and not a cause for concern yet, but that it's possible that he will require CIC every 3 hours after treatment, possibly indefinitely. This isn't guaranteed yet since he's still undergoing chemo and we need to do more testing, but it's a distinct possibility.

Now, the question that I'm sure pretty much nobody has experience with:

My wife and I are both working parents. While we've had to make sacrifices for his treatment, said sacrifices can't remain forever. Put plainly: we both need to resume working. However, the problem is that we've sort of hit a dead end in terms of how to handle this with childcare. Our findings so far:

- Any preschool/daycare we've talked to doesn't handle this situation at all. Some just plain said "no".
- The school district preschool does handle this, but only has a program for 2 hours a day.
- A select few would allow us to come in every 3 hours to do the CIC for him--but that would require probably close to an hour (or more) of commute time there and back in the middle of the work day.
- We've called our insurance and the only option they have is a home health nurse or a private duty nurse--both of which are billed in 4 hour chunks, which makes both not a feasible option when it comes to cost.
- We're not eligible for any social programs due to income level. We've looked and looked and looked.

Does anyone have any experience with this? Any suggestions? Any tips?

 

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My heart aches for you and your son. I wish I could help! You will get a lot of prayers from this group for sure and I hope someone can help you.

 

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Wow that's a tough situation. I'm sorry I have no advice. Sort of sounds like someone needs to negotiate a stay at home job? Unless you can hire and train a home health aide?I don't have any other ideas. Sorry but sending best wishes

 

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@TomSakks
Really tough. I know nothing about this. But we will pray for the little 3-year-old with the sarcoma. I would go to the county health department with a pad and pen and ask them for suggestions of available help. Also, see if the hospital can give you some leads to follow up on. Do you know any nurses who can give you suggestions?
May God bless and open doors for you and touch the body of that little one.

 

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Sorry to hear of your situation. It sounds like one of you must stop working permanently and that your son may need to be homeschooled for the rest of his life, at least until he’s old enough to do a CIC himself at school. That’s a hard reality to face - one of you needing to stay home - and surely not your first choice, but I think it’s your only choice in this matter.

Something else to prepare for in the future is that eventually, the more times something goes into our urethras, the more and more scar tissue forms until sometimes eventually, one can no longer pee without a catheter or there may not even be enough room left in the urethra to insert a catheter, at which point your son may need surgery to fix or replace his urethra. He may even end up needing a urostomy bag. Fortunately there are far more solutions for this for a male than a female. But you may want to discuss this with your physician so you can be prepared to save money for that future surgery and perhaps even eventually emotionally prepare your son for the surgery as it will likely come up.

I recommend your son see a urologist, or a child urologist if you can find one, before your son has this procedure, so you can have realistic expectations and know how to better plan for his longterm bladder health.