Kiddos Update

Lot's happening around here, some not good, some wonderful, some in a holding pattern.  This kiddo has finally snagged a job, a job she wants!  That is one worry off my mind for her.  With us closing our business that meant she lost her part time job with us, along with her hubby's job with us.  But it finally happened and she is on top of the world.  I/we will still need her to finish out the closing, she is invaluable!  

This weekend Snicklefritz and I FINALLY got some time together, just us two.  We even got to the studio to paint, which she has been wanting to do for a really long time.  It was a short spend the night but it was a spend the night and we had a great time.  Tonight she is going to see Hamilton.  We saw it a couple of years ago and for some reason is back in Tulsa.  We didn't want to see it again and I know it is her ABSOLUTE FAVORITE, so we gave them our tickets.  I'm so very excited for her.

I've also started packing up my studio and actually moved some today.  I have a lot more to go but it has started.  Kind of sad and I will so miss Linda and our visits.

On a good note, last week Min made it to her day school every day without incident!  Today she even made it to her catechesis class and then I picked her up and was onward to her regular school.  She didn't even wave goodbye, just made her way to the jungle gym.  So glad she has passed those dark times.

She also got to go see her Momma in OKC.  It has been so tough on EVERYONE to be split up like they are, we are.  But Max is a priority for her momma right now and she is being taken care of to the utmost.  

Max update, day 66:

**Specific prayer request: please pray that Max’s severe reflux resolves. We ask that it resolves without the need for any more variations of feeding tubes or surgery. Thank you.**

Heart-wise, he’s doing well, considering. But this reflux is just awful.

They’ve tried all sorts of variations of meds, and today they put in a transpyloric tube (a TPT), which goes through his nose, through the stomach, and into the small intestine. Since he had that placed this morning, he’s still had emesis twice, vomiting bile, with two episodes of bradycardia (low HR).

I don’t understand it. We don’t know why he started having trouble after the g-tube was placed. It’s so upsetting to witness him have these episodes. I fight back tears every time.

If this continues, they may consider a surgical procedure for a Nissen wherein they tie the upper part of the stomach with the lower esophagus. Or we wait till he’s 7 kilos (he’s 5.3kg) to place a G-J tube. It could be another two months before he’s 7 kilos.

They said that feeding is the most frustrating part of this. Babies often have reflux, but having reflux with a critical heart defect is a much bigger issue. It’s not uncommon for heart babies either.

His second surgery, the Glenn, usually happens around 4-6 months. It’s completely within the realm of possibility that we may never get him home between now and then.

I have avoided going home for various reasons. Yes, I have been in OKC since January 2nd, and have not been home once. I’m a nervous driver even when not stressed. I’m terrified of having a panic attack on the road, or God forbid, I get to Tulsa and have to turn right back around for an emergency. I worry that the second I’ll leave, something will happen. And I worry about no one being here to advocate for him. I’m the only one who sees him every day and can literally sense when he’s going to brady/vomit before even the monitors pick it up.

I need to go home and be with Minerva. I need to do this drive and wrap my head around going back and forth.

Thank you for your prayers. We need them.