pictures

I decided there is just a whole lot of writing on this blog and not near enough pictures. I'll try to do better about adding pictures as well as writing.  Here are a few from the recent past.  Sorry about the picture quality, they are cell phone pictures.



with an ng tube at one of our stays in July. we were able to
remove it before heading home because she was eating well.




this was while waiting to see if Livi would be getting the liver




she had a big smile about something




Alivia's BYL (Bless Your Liver) onsie that we made



Dry run

So Friday night, we went to bed at about 11:30. At 12:30, my cell phone rang and it was the liver transplant coordinator. She said that they had a liver and wanted us to head to PCMC right away. She said that we were a backup recipient to a baby that was having some issues and might not be able to receive the transplant.

Talk about adrenaline kicking in.  I needed a shower so I jumped in really quick and Ryan got the other kids up and ran them to his parents house. Then we threw our bags together and loaded the car and in less than an hour we were on the road.  Can't say I've ever driven to SLC in the middle of the night before.  They wanted us there as close to 5 am as we could. It was 5:10 when we pulled into the parking garage.  We got admitted and went up to our room.

Right away, they started taking vitals and placed an IV for fluids and started drawing large amounts of blood for labs.  Then it was just a waiting game.  We were all exhausted so between people coming into the room, we tried to sneak in some naps. Poor Alivia had been without food since 130 am, the last bottle we gave her just as we were leaving. She could not have anything to eat at all.

We waited and waited and waited some more.  It took until about noon before we heard that it was very likely the other baby would be getting the liver.  The nurse told us that he has been really sick for a long time and that he has missed out 2 or 3 times because he's been too sick for surgery.  They still weren't absolutely sure that it was going to work out so we just had to keep waiting.  About 330, they said he was going to receive the liver, but wanted us to stick around until they got his liver out and were ready to put the new one in.  So we waited some more. About 6 pm, we got another update that they were running behind a bit and it could be a couple more hours.  At about 7, we were just getting back from eating dinner, when our nurse caught us in the hall and told us that they were discharging us.  At that point, I just broke down and cried.  I'm still trying to figure out why. I don't know if it was relief, disappointment, discouragement, or just a release of all the anticipation. Maybe a combination of everything, I don't know.

So we got our stuff put together and finally got to make a bottle for Livi. She scarfed it down. And we were on our way home by 815.  It was almost 1230 when we got home.  What a crazy 24 hours it was!  It was such a roller coaster of a day. 

I'm so glad the tranplant worked out for the other baby. Sounds like he needed it much more than Livi does right now.  I hope that all continued to go well after we left and that he will recover well and go on to live a full life.  May God bless and watch out for him and his family and also the donor family. What a blessing!

Next time, hopefully we will be the recipient instead of a backup.  But I guess we learned a few things with this dry run.  There are some things that we can do to be better prepared when we get that call again.

So for now we are back to the waiting game.

Alivia's Transplant Fund

Hi Everyone,

Last Saturday my husband lost his grandpa.  The family decided to ask anyone that wanted to contribute money to the family, contribute to an account set up for Alivia's Transplant.  We've already seen the generosity of many, which we are very grateful for.

So if anyone reading this blog would like to contribute to that account, I have given the contact information for the bank below and also on a sidebar here on the blog.  The contributions are anonymous so please know that if you do contribute financially, we are very grateful.

The Bank of Commerce - Rexburg Branch
Alivia Ward Liver Transplant Fund
180 E 2nd N
PO Box 517
Rexburg, ID 83440

(208) 356-8080

We have a long road ahead of us and it is comforting to know that we have a little help with some of the expenses along the way.

Thank you!

The Ward Family

Liver transplant program 15 year anniversary picnic

That is a mouthful!

We had clinic on Friday and stayed over so that we could attend the picnic on Saturday.  I am so glad we did that. We met so many people who have been exactly where we are. They all were very friendly and more than willing to answer questions and give advice and encouragement. It was also very encouraging to see all they kids running around that have had transplants.  They are just regular kids. There are hiccups every once in a while still, but for the most part, they are all healthy and growing and just being regular kids.  I think we needed to see that.

They had lunch and face painting and balloon animals and scrapbook pages and games. We took the whole family with us so that the kids could participate. I think they will eventually become friends with the kids. It was good for them to see that these kids can be healthy and normal as well after a transplant.

They spotlighted the oldest transplanted child who is now 15 and also the most recently transplanted little girl, which was done 2 months ago, and also the most recently listed, which was Alivia and another little girl. Alivia is the youngest at this point.

It was so good to connect with all of these wonderful people. They are only going to add to our already awesome support system. I can't wait to get to know them better and form friendships with them.  It is gonna be part of our life from now on.

PCMC checkups

Since the last post, we've been back down for liver clinic checkups twice.  Both times went well. Her bilirubin level is headed up with each set of labs and her albumin and INR levels are getting worse as well, so her PELD has now gone from 23 to 28 and now as of Friday 31. It was officially recertified at 31 so they should be receiving many more offers with such a high score.

She hasn't gained much weight, but they believe it is just due to additional fluid loss from her ascites. We are still on a high calorie diet and they told us to feed her however much she will eat. There was a ceiling on her intake for a couple of weeks, but they removed that since she seems to be doing and eating so well. She is filling out again so she is putting some weight on. Now that the fluid is gone, maybe it will translate into real weight gain before the next clinic checkup in 2 weeks.

BUT she is holding her own and doing as well as can be expected for now.

Milestones:
In the last couple of weeks, she got 2 teeth while at the hospital this last stay.
She has started eating some solids and is LOVING them. She gets so excited when she sees that spoon coming towards her.
She started rolling completely over. She's even figured out that she can get around a bit by rolling.