Headed to bed

I am heading to bed, hoping for a good night of sleep...or at least better than the last two nights have been. Michelle, our transplant nurse practitioner came in today and told us that as soon as Malakai smiles, she'll sign our discharge paperwork! LOL Everyone knows how smiley he is and so they know he'll be feeling well enough to go home when he smiles! She said "You have to smile at ME, not mommy and daddy and I will send you home!" Now home means St Louis, not Indiana. But I can't wait!!! Hoping in less than a week we will all be together. Keep praying for us!

This pic just makes me smile

When I'm having a hard time or Malakai is really fussy (like right now) I just look at this pic and it makes me smile! This was taken the night before we got the call. Still smiling and having a good time!

This one is really cute, too!

I couldn't be happier...

He is doing so well! They haven't technically talked discharge, we're certainly not ready. But they have said he is totally going in the right direction! I asked what he needed to be discharged and he has to have no fever (hasn't had one at all) eating well, and labs stable. His labs continue to get better each day. He's not eating as well today as he did yesterday. He wants to breastfeed alot, but my supply is so low. He actually drank formula out of a little medicine cup earlier. He just does not like the bottle!

Last night was a terrible night of sleep for everyone. He woke up wimpering/fussing every hour! I'm not sure if he was in pain, hungry, irritable, uncomfortable...I'm not sure. But he didn't want to take a bottle. He was given pain medicine about every 2-3 hours. His incision opened a little last night and bled. So the nurse put more of the surgical glue on it. So I'm sure that was affecting him some. They pulled his last drain yesterday and he's a little swollen. The surgeon said he wanted to go ahead and pull it even though he was leaking a ton so he wouldn't "dry up." So now it's just staying in his body. He's continually getting Albumin, which is supposed to help pull fluid out of his body and put it into his vascular system so he'll eventually pee it out.

Makena just fell asleep in the bed with him. It has to be one of the sweetest "Kodak" moments I've seen in awhile. She has so much energy, she never just falls asleep. So to get a picture of the two of them together is something special. He is now sleeping with her, but the pictures I got...he is awake. Here it is...Sweet huh?

He's on the right track...keep it up Malakai!

A lot has happened in the last few days, it's incredible. He lost another drainage tube today, his last one! Watching the surgeon pull it out (he did it bedside) was awful. That tube looked 12 inches long! And once it was out, he lost alot of fluid...it just wouldn't stop coming out! He was finally able to put the glue on it and get it to stop. So he has one IV in his wrist, his Broviac, and his feeding tube...that's it! We gave him a little bit of a bath this morning to clean up the obvious spots. He looks so much better today. He's acting very crabby, which I can only imagine how he's feeling. He has every right to be crabby! He's breastfed some, and actually has taken a bottle. As much as I am into breastfeeding, if we can get him to take a bottle, I will almost be relieved. This pumping and storing and only getting 1-2 ounces is getting to be pretty tough on me. Whatever is best for him, I will certainly do. Last night he was given pain medicine orally and threw it up. So she came back with more and he threw that up. So he's back to Morphine, but hopefully he won't need it much longer. It makes him lethargic. Keep praying for us. We're hoping we aren't in the hospital too terribly long. I can't wait to bring him home!

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 heart...it 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 saying...lol 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 it...so 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.

He's doing well, not too much to report

Same thing as last night basically...although he has had Pedialyte from a bottle. We are hoping to break his aversion to bottles and get him to start taking formula or breastmilk from a bottle. He's a little sluggish, I think we are going to start weaning him off some of his pain meds. I can tell he's becoming more aware of his surrondings...he's starting to pull his oxygen out of his nose! He doesn't like it and won't leave it alone.. We may have to restrain his little arms, I'm sure he'll love that! He's doing great though. The docs are very pleased! Here's a pic of our little man from this morning...

What a day!!!

I am so glad the surgery is over! What a roller coaster of emotions! He is currently sleeping in the PICU and mom is going to get some dinner. We have to eat in the waiting room so I have to wait here until she's done. I thought I'd jump on and give an update.

The doctors are very happy with where he is. His levels are as stable as they expect. He has had a little trouble with pain management, he did at Riley during his Kasai so I sort of expected it. He's on a continuous morphine drip right now so he's staying pretty comfortable, but still gets irritated occassionally. He's going to have a few blood transfusions, I guess that's pretty normal. He's got a lot of drains and IV's right now. A little overwhelming. I am going to try to post some pictures of him soon. I know I would be wondering what he looked like :) We found out the donor was a 10 year old. My heart aches for the family. It's absolutly bittersweet. I can't hardly think about it. I am so grateful for the decision they made to make their loved one an organ donor. I can only imagine the pain they are going through right now. I am praying that God pours out an abundunce of grace and peace on them right now. I hope they know they saved a little boys life! I'm also thankful I didn't have to go through surgery. I can't imagine being in a hospital bed across the street and not being able to see him and talk to him. They are supposed to be getting an actual patient bed in his room so I can lay next to him. He wants to be held and cuddled, but that's kind of an impossibility right now. So the next best thing is for me to lay with him. I hope it comforts him.

I know the road ahead of us is going to be a long one, but I just am looking forward to seeing him well! I can't wait to see him do the things we have been waiting for, like rolling over, sitting up, etc. Those who've been through this before have said they didn't realize their child was as sick as they were until after transplant. I can see how this would be true! I can't wait to see him thrive! He is a fighter and I have a feeling this recovery will be fast for him!

Continue to pray for him and us. We are rotating our sleep schedules right now so that someone is always in the room. But it's still very exhausting! Thank you to all that are continuing to pray for us!