For today, tomorrow, and maybe the day after...

We gotta plan.....sort of

So as your Dad posted moving to Loma Linda is a no go for now.

Insurance companies by definition suck.

So I was talking with the resident taking care of you today and she went over what steps we need to do to get you home.

She agrees that the two major issues are your breathing and eating.

First we have to get the nap study done, and then maybe the sleep study depending on the results of the nap study.

Second we need to get the surgery done for your gastronomy tube (feeding tube). We could get lucky and get in for surgery today, or it could be in a week, it all just depends on our luck. After you get your tube in then it will be about a week and a half recovery before we get home.

So best case scenario we are looking at two weeks more or less.

We have to get out of the Ronald McDonald house on Saturday and stay out for two days before we can get back in so we are looking for a cheap hotel near CHLA to stay for Saturday and Sunday night. Then we will get back in RM house on Monday where I will stay till we go home (or hit the 28 day limit again).

Dad has to go back to work on Tuesday so it will just be you and I till Dad's next day off. That part kinda sucks a lot. I'm not gonna lie I'm dreading the thought of him leaving.

I'm thinking I will just stay with you for our usual 8 am till around 11:30 pm (with a lunch and dinner break).

The thought of you being alone from 11:30 at night till morning is killing me but I just don't see any other way of doing it.

So yesterday CHLA opened a big old can of getting it done!!

When I came in at 8 am you were already in the hall going down to the GI lab for your bowel study. You did great but they did find a tiny bit of Acid Reflux.

You hated every second of the test of course

I really wanted to get a pic of your stomach on the screen but I had to hold your arms down because you were PISSED!

Because of the Acid Reflux they have decided to do the Nissen surgery when they do the feeding tube surgery

Then in the afternoon you went for your sleep study. You need to sleep for the most part of an hour so you kept me pretty busy patting you to sleep and keeping you happy.

All of these wires were put on you! It took almost as long as the test.

It's the 6 million dollar baby! We can re-build him!

We wont get the official results of the nap study till later today but a little bird told me you did well with no major desats (drops in oxygen level) till they put you on 1/4 liter of oxygen. Then your level fell to 92% which is too low so I figure we will be going home on some oxygen but we will see.

Cross fingers and send good thoughts we get into surgery soon so we can start the countdown to getting home.

So now we've got a plan for the next few days let's see what the next few days has in plan for us.