November 29

So sorry for the lapse in posts.

Today Max was admitted to Helen DeVos Childrens Hospital with a possible blood infection. At list point we are waiting to see if this new culture "grows" anything. We aren't sure how long this stay will be. Just waiting like, always.It is frustrating to be here, but a blood infection isn't something to mess around with.
On the up side the docs aren't going to give him anymore chemo!!!!! Can't believe it, but I am going with it. Even though this journey only began in March it feels like we have been dealing with this for years.

I can't wait to post pics of him! He is doing soooo sooo sooo good (other than this little set back and last months pneumonia)!!!! I had no idea he was sick. He is running around, laughing, singing,...the kid is so resilient. He blows me away.
I will keep you posted with the cultures results.

Thanks for your prayers. We really do feel them. He wouldn't be where he is without the support and love of everyone. Who are we kidding, I would be committed without your prayers and support. =)

October 2

Today was Max's first transplant clinic appointment. So far so good!!! His labs came back great, the liver is "taking" so far! The only thing we need to watch is his fluids. He is having severe severe diarrhea from all the meds. He is a little dehydrated. Which can get pretty serious if not taken care of. Thankfully giving him more fluids is an easy solution. So, poor Max is floating away from LARGE amounts of water. When I walk up to him he says "no moe (more) wawa (water) Mommy, no more wawa." He is so stinkin cute.
He is finally settled into being at home. He is now playing, laughing, and "reading" again. I have such an awesome kid. I know I say that a lot but I really really have an awesome kid(s). Wes is doing so great with all this chaos. I think he misses Grandma though. He keeps asking if its a Dama (Gandma) day. Thankfully we didn't exhaust Grandma to much and she still comes to hang out. =)

September 26

I just realized I never posted that MAX IS HOME!!!!! He came home Monday late afternoon.
We are all adjusting. Max is walking around a little. He is still EXTREMELY clingy to me. Which I completely understand after everything he has been through. We are doing LOTS of rocking in the rocking chair. When I do get a minute I am trying to organize the house and all his new meds. I thought he was on a lot before, Wow was I wrong. Many Many meds and on a VERY VERY strict schedule.
All in all we are doing pretty well. Max has an appointment with his oncologists tomorrow (Thursday) and a follow up in the transplant clinic Tuesday. Its going to be a chaotic fall, but at least I have my little guy on the way to recovery and health (if I dare use that word).

September 21

Max is loving being on a peds floor. He has gotten to take wagon rides (one of his most favorite things to do), play with the Physical Therapists, and play with his toys. I LOVE to see my little man being a kid, not a patient.
He has had a really great couple days. ?The only complication was today. At some point during the day he opened up part of his incision. They aren't quite sure how they are going to fix it yet. This Mama says I don't care how you fix it just give him some meds. He has one BIG case of "white coat syndrome."  Who wouldn't after all the stuff he has been though.
If things continue to go well Max will get to go home Monday! That would be INCREDIBLE!!! Can't wait to have all my guys under one roof with me.

Sept. 16

Max is holding up pretty well. He is still dealing with a lot of pain. He is off CPAP, in an uncuffed trach, no more ART line, and he also got rid of some of his IV's. He is making progress people!
We are still in the PICU. Max isn't quite out of the woods of being put back on the CPAP. It is something they can't do on a peds floor. He also needs to stool/pass gas. He has a very distended tummy from all the gas. It makes thing incredibly painful for the little guys. Lastly, he needs to be eating at a certain rate and digesting the food completely before the trip to peds.
Good news is that the liver seems to be taking! So far the ultrasounds and blood gases look really good. So our main goal is being archived. The rest will hopefully fall into place soon.

It has been difficult to comprehend the gift Max has received. It's so incredibly hard to process that someones child had to pass away on order for mine to live. I can never say thank you enough to that family. I just... there are NO words.
 

Sept. 15

Max is doing fairly well. He is retaining a lot of fluid which is making him VERY puffy. This is in turn pulling on his incision and making things very painful. The fluid is also making it difficult to breathe so his oxygen needs are up. He had a couple times today that they had to medicate him to a point of "stoned" just to get him to calm down.
The good news is that so far there isn't signs of rejection. Blood draws and ultrasounds show good levels and blood flow.

Sept. 12: Max Liver transplant update

Max's transplant is complete. They are currently working on closing him up. Everything went well. The donor liver was a great fit and in great condition.
There was a couple hurdles. The surgeon had a difficult time with the number of veins that formed going to the liver. Also, in a couple places dead cancer cells stuck themselves to other organs.
Overall though he is very pleased with how things went.

Thanks everyone for your prayers and words of encouragement. Please keep them coming. Max has some difficult days ahead of him.