Saturday, May 16, 2009

He's doing GREAT!

The doctors and surgeons couldn't be more pleased with him. So from a medical stand point, he's doing wondeful. From a parental standpoint, I hate to see him so grumpy. He's not in pain, just irritated. He cries whenever he sees a nurse coming in his room. He lost alot of his tubes and drains yesterday. He had a chest tube drain and that's gone! He has lost 3 of his 4 IV's. He still has his Broviac, a central line into his will stay for a few months. They can draw labs and give him medication without having to stick him. Let's see, he still has a JP drain (that's what it sounds like they're I could have that totally wrong) which is draining the fluid out from around his liver. It was bright red, looked like blood, right after the surgery, and it is now pink...which is good. I slept in the bed with him last night. That was uncomfortable, but I loved it! I love that I'm able to comfort him. I missed that connection with him...and drum roll please....He breastfed this morning :) He has been REFUSING a bottle of anything. No formula, no breastmilk, no pedialyte, no apple juice...nothing. So we get the NG feeding tube back :( I kind of assumed with how malnourished he was, that they would put him back on it...just to fatten him up. The surgeon said yesterday that Malakai had the most prominent ribs of any baby he'd transplanted! I was shocked. I mean, I knew Malakai was very skin and sick, but to say he was the most boney of any kid he'd transplanted shocked me. I guess I wasn't really telling people how bad he was because it was scary. Just not knowing what would happen next or how soon things would be happening.

Mom, Brian and Rachel all left today. I was soooo thankful to have them out here during the first few days of transplant. I don't know what we would've done without them! Brian and Rachel kept Makena so we didn't have to worry with who would be keeping her. We knew she was in good hands and she likes them. THANK YOU GUYS SO MUCH!!! Makena has been going to the Siblings Playroom they have on the lower level. I am so thankful for that place. She loves it down there and it's somewhere she can go from 9-12, 1-4, 5-8....they give us a pager and we know she's safe!

The nurse asked me today about how he was with getting his tube put in and I told her it was getting a little more difficult as he got older and she said she wasn't the best at I took that opportunity to say I would do it. I figured with as much practice as I've had, I knew I would do it right. Funny that I am doing the nurses job. I really should go to nursing school after all this is said and done!

Well, it's taken me all day to update this. Hopefully I can get on later and make another update that makes more sense.

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