In search of the golden ticket

We’re at a nursing home with Ike-a-saurus in small town Texas for the next 24 hours.

WTF, right?

It’s like the slumber party game, “what would you do for twenty dollars?”

Would you put your finger in the furnace?
Eat this poop?
Run naked to the bus stop?
Take your sick trach baby to a nursing home two hours from your house and sign a fucking scary form that says yes, indeed, you want to keep custody of said trach baby?

Well, in return for staying 24 hours in this sad and scary and stinky and germy nursing home, we hugely increase Ike’s chances to qualify for MDCP. It’s a program that will pay for 40 hours of nursing a week, medical supplies and equipment, formula, pretty much everything. But it’s a weird, sketchy process to jump through loopholes so we can avoid the 7 year (!) waitlist.

That’s why we’re here.

I wish I was doing better at making the best of it. I feel like a snobby asshole, to be honest. But I don’t want him to pick up any germs. We can’t have that. Cannot have it.

I wish I could take him out of the room and parade him around. I know the residents would love to see a smiley baby. He could work more magic than a therapy dog. Seriously. But we can’t risk it. And I am sad and freaked out by being here. We’ve already yelled NO when someone tried to touch him on the way in.

In 45 days we’ll know if we qualify for the MDCP.

I think this night itself is going to last 45 days.

In search of the golden ticket

In search of the golden ticket

7 thoughts on “In search of the golden ticket

  1. Love the picture of Ike, such a beautiful guy! what town? There is a lot to be said for a bigger city w/ amenities (and cleansers which don’t always seem to matter out in the boondocks). I can say that as I grew up in a small town. About two hours from here (Outside of Kerrville)… I sure hope your 24 goes FAST FAST FAST and you can get the hell out of dodge soon (which is what I did).


  2. Holy balls. Hope the time friggin flies by and you are home before you know it. Love the pic of the little dude. Just chillin’…what a trooper.


  3. Another example of our messed up healthcare system. I hope Ike avoids all the bad germys and you guys can get out of there soon! Stay strong!


  4. Kari, I’m so proud of you for doing this!!!! Julio is 6 and a half and made it to the top of the MDCP list a couple of weeks ago. I don’t think I would have had the guts when he was a baby and hadn’t heard about that option back then but have no doubt the trade-off of yuck vs. services would have completely and totally benefited him. Claire


  5. I just came across this blog for the first time. Sounds like your baby has GER. My little boy was born with Pyloric Stenosis. They did the Pyloromyotomy on him when he was 2 weeks old.
    The puking didn’t stop there though. He had GER type II also, and they did another surgery on him at two months old. This time is was a Nissan Fundoplication.
    Most babies that have both of those diseases end up dying because of failure to thrive. I ended up coming up with my own formula and fed it to my baby. He didn’t stop puking, but at least he gained weight in spite of it.
    My Ped. asked me for the formula I was using so he could have some other Mom’s try it too. About a month later he told me that the other Mom’s that were using it, had babies that were gaining weight now too.
    If you’d like to try it out, here’s what I used:
    1 part Goat’s milk
    1 part Soy milk
    1 part 1% Milk with 3 tsp Carnation Baby Formula
    My son kept it down longer than anything else we had him on.
    The surgeries helped him a lot. He leads a normal healthy life now, and he just celebrated his 13th birthday in Feb.
    I know this is a hard road to travel when your baby is sick. God Bless, and I hope he is well soon.


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