Transplant list

So we just got home from Primary Children's today (Saturday). It was a long, stressful, emotional, intense few days while we were there.

Alivia's belly has softened up a bit, but it actually is larger than it was before. I'm not quite understanding how that happened, but the doctor didn't seem too concerned about it. I think the diuretics must just be working, just very slowly. Hopefully, they do continue to work so that Alivia can be comfortable.

Thursday was a very intense day. We started the workup of getting her listed on the transplant list.  It is a lot of meeting with doctors, surgeons, social workers, transplant coordinators, nutrition specialists, infectious disease people. Everytime we turned around there was someone else coming in to visit with us.  We had an aweful lot of information given to us. It seriously has taken me a couple days for it to sink in enough to where I even want to look at all the papers and pamplets again. It was very overwhelming and emotional.  Ryan said it all hit him last night and kept him awake much of the night.

It is so strange to be discussing transplant and know that very soon she be getting one and the rest of our lives will be turned upside down again for quite a while. We are so thankful to have such wonderful family and friends and church as our support system. We are going to have to make sure we use it...actually there is no way we could do it without them.

Some of the information that we learned is how the listing works.  All these evaluations and labs and stuff that Alivia has been enduring these past few days will all contribute to her PELD score. She is given points based on lots of different criteria. The higher the sum of the points, the closer to the top of the list she gets.  Right now, they figure she is at about 16. They said most kids are transplanted at 25-30, but there are kids that have also been transplanted at 18. It is a pretty complicated system. She will move up and down on the list based on her level of sickness and the urgentness of her situation.  They said most kids wait less than a year for a liver once they are listed.  Once all the workup is completed, they meet on Mondays as a committee and make a recommendation to be placed on the list. They have to get insurance approval and once that is done, they are on the list. They said that by the end of next week or beginning of the week after, we should be listed.

Our family has to do a few things in order to be ready. All the kids have to be caught up on the immunizations, Ryan and I have to get Hep A & B immunizations. We all have to get a Tuberculosis test done. These are all precautions against additional sickness. So that is stuff that we are going to work on getting done this week.

Once an organ has been offered and accepted by the tranplant team, we drop whatever we are doing and head down there. They said that there is usually about 8-12 hours to get the transplant done once the organ is procured. So we won't be traveling far from home for a long time.  The transplant can take from 6-12 hours, just depending on the surgeon.

After the transplant she will be in the hospital for 2-3 weeks and then they want us to stay in the area for about a month after that just to make sure that all is well and so we can get labs frequently and checkups frequently.

That is just a piece of the iceburg of information that we have been given. I tried to write stuff down, but it is just too much. I'm gonna have to read through the paperwork multiple times before it will all sink in I'm sure.

Yesterday (Friday) she was to receive a PICC line. They tried first thing in the morning and couldn't get it in so they had to take her down and have radiology do it yesterday afternoon. So she was pretty out of it yesterday have been sedated both times. Poor little think would just sleep and whimper when she was awake.  They did successfully get the PICC in that time so then I got to learn how to give her some meds through an IV. Luckily she will only be on that med until Tuesday night.

Today, we were discharged about 9:30. We had a good drive home....although very long. We had to stop in Idaho Falls at the home health place so they could give us the IV and the medicine and all the other stuff that goes with it and some more instruction. We also had to get a couple prescriptions while we were down there so it kindof stretched the drive to about 7 1/2 hours. But we are home and Alivia is noticibly happier. We were all ready to be home.

After we got home, the other kids came home from Grandma's house. Alivia was so happy to see them. She was all smiles and even was laughing so hard. I just cried. We've hardly had a smile let alone any laughs out of her for the last 3 days. It is bringing tears to my eyes as I sit hear typing this. It made me so happy to hear that laugh. She is now peacefully sleeping in her own bed. This is probably the best sleep she's had in 4 days.