Thursday, February 3, 2011

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.


smayes2000 said... Best Blogger Tips

I've been following your blog after hearing your story on Couponing to Disney. My heart goes out to Mason and your family and I am sending positive thoughts and prayers your way! I wanted to share a song with you that helped me out when my 3 week old daughter spent 3 weeks in the PICU fighting for her life when adenovirus took over her little body in 2007. The song is "Behind the Clouds" and it is on the Disney CARS soundtrack. I found the lyrics to be very inspirational and they helped me cope during that stressful time. I knew in my heart that she would get better and would be going home with us and these lyrics helped solidify that in my head! Check it out on Youtube if you get a moment. It might help you a bit too!

AnnMarie said... Best Blogger Tips

I too am a follower from Couponing to Disney! This is all sounding better and better. I know you will be so glad to get home and have all your family under one roof. We were only in the hospital nearly 3 weeks with our twins, had to be away from our not quite 2 year old, but I couldn't wait to get us all home and under one roof. It is joyous! Continue to keep you all in our thoughts and prayers. Mason is growing so fast and is absolutely beautiful!

Justin and Victoria Nelson said... Best Blogger Tips

Hi there,

I have been thinking about your family ever since youu introduced yourself on our blog. Moriah was in the same hospital in the beginning of her journey. I even recognize Nurse Margaret =)
Our thoughts and prayers go out to Mason and the family. He is such a cutie pie, and I can tell already he is a fighter! Please don't hesitate to contact us about anything. We are more than willing to help out!
Sending lots of hugs and prayers,
Victoria - for the Nelsons

dxeechick said... Best Blogger Tips

I'm happy to hear the positive and a little disheartened to hear the not so great. Just know that you guys are in our prayers daily. You will all be back together soon and this time will have been a small blip in the big scheme of things.

Michelle said... Best Blogger Tips

I am sorry you and George have to be apart...another hard thing you have to endure, how much more will God put you through till he finally says enough. Mason is one lucky baby, you and George are the most dedicated parents on earth. I love you both for your courage, I hope it's contagious I could use a little myself.

The Houston Family said... Best Blogger Tips

My daughter made it out of the hospital 6 days after her g-tube and nissen fundo. I will pray that Mason beats her!

ellen charge said... Best Blogger Tips

another common thing with charge i have both fundo n tube hugs