Hospice

Hospice... what a devastating word to hear.

Today I took Evan into the Doctor's and we had "The Talk". We were told that Evan's liver will not make the grand turn around that we were hoping for and there is nothing more the doctors can do to help him. As of today Evan is on hospice and will no longer be making trips to the doctors.

Hospice will come in and do everything that they can to help make Evan comfortable for the remaining time he has left. The doctor doesn't think he has more than a month to two months left.

I feel like my feet have been taken out from under me and I can't turn off the water works...I feel broken

My dear friend told me that grief will come in waves and that I just need to ride the waves all the way to the shore. I love her dearly for bringing a smile to my face. (Thanks Darcy, you are a rock)

My sweet Brother and Sister-in-law are coming to my rescue to give me the comfort that can only come through the power of the priesthood. Thank you my dear brother for coming to my aid and letting me lean on you, I love you so much!

You are all a strength to me, thank you for carrying me through this.

Christmas night in the ER

Our Christmas started out amazing, with our kids all together along with our sweet grandbaby. We had our traditional opening of presents and a family breakfast. Evan was able to spend most of the morning with us but it soon wore him out.

Later that evening we had all of Evan's family over for a family party. Evan spent most of the time in bed but enjoyed his family visiting with him in his room.

Then came midnight!!! Evan woke up in a lot of pain and felt like his abdomen was going to burst so we ran in into the ER. They took good care of him and relieved his pain by removing over 3 liters of fluid from out of his abdomen. We arrived back home around 7:00 in the morning. It was a very long night.

We are still watching to see if his bilirubin counts come down. So far there hasn't been much improvement.

Christmas Miracles

We received some great news today!

Yesterday, I took Evan into the doctors to get more IV fluids and blood drawn. Once we got there they decided to do a CT scan, this showed that his liver was pushing fluid into his abdomen. They drew off the fluid and sent it to a lab for testing and they called me this morning with the most amazing news.

They said that the fluid showed that he has an infection and that is why his bilirubin count has been so high. The reason they couldn't find this before was because his white blood cell count was never elevated. They feel that with IV antibiotics, Evan will feel so much better.

The doctor said that he is guardedly optimistic because Evan still has liver disease but this should help him get more energy and he could possibly live to see another summer.

For me.... this is my Christmas Miracle and an answer to many prayers.

Cruise to the Bahamas

We have been so blessed to have such wonderful friends and family. We have received so much love and support during this difficult time in our life's and we love each and every one of you. So many of our dear friends and family have stopped by for visits and it has been so great to see each of you.

Earlier this month we were given a gift of a cruise to fulfill another of Evan's bucket list items. It has truly touched us and we can't say thank you enough.

We left on Sunday Dec 5th and flew into Orlando Florida where we stayed the night in a hotel with the view of the ocean. The next morning we boarded the ship, we were both so excited! Once we were checked in and able to go to our room, we found another gift from two of the ladies that Evan worked with. Once again, we are amazed at the love that has been poured out to us.

The weather was cool but that didn't take away from the excitement of our adventure. Most of our travel across the ocean was done while we were sleeping and that is a good thing because the water was pretty rough. So instead of it making us sick, it just rocked us to sleep. When we woke up in the morning we were surprised to find we were in Nassau instead of on the private island (CocoCay) because the water was too rough to make it to the island.

We spent two days in Nassau and we were able to get off the ship a couple of times. It was difficult for Evan to do much so our excursions were short but we made the best of them. We were not able to enjoy too much of the night life on the ship because Evan needed to get as much sleep as he could but one night around midnight, Evan woke up and had to have ice cream. LOL Evan NEVER eats ice cream! So we got up, got dressed and went on the hunt for ice cream. It's a good thing that there is always food to be found on a cruise.

We then departed at midnight for CocoCay. It was a beautiful island with so much to do. Evan and I enjoyed watching others swim in the ocean, parasail, and jet around on ski jets. We didn't spend too much time off of the ship but we were able to take our shoes off and put our feet in the beautiful blue water. When it started to sprinkle rain we decided it was time to go back to the ship for a nap.

It was nice to come home and find a stack of Christmas cards and get well cards. The trip home was hard on Evan. We had been gone all week and he was getting weaker every day. When we got home Evan crashed and has been sleeping about 22 hours a day. I took him into the doctors for some IV fluids and they drew his blood. His bilirubin counts has now climbed up to 22.3 and his ammonia levels have tripled. He will go in again on Wednesday to see, with some new meds and the fluids, if his counts have come down.

It was a very difficult day because it was time for the nurse to have a conversation with me about Hospice. I am holding it together pretty good for right now, we all feel pretty numb.

Doctor Visit today

Today I went in to get some fluids to help clean out my liver since it isn't doing it on it's own. They gave me 3 bags and I will have to go back Friday for 3 more bags. They ran my blood to see where my Bilirubin was at now and it has shot all the way up to 15. WAY TO HIGH.. remember it is supposed to be at 1.

The doctor has me trying everything they can think of to help my liver start working better but I don't know when it will start to work better on it's own.

anyway, I am at peace with what ever happens so not to worry. I will keep you posted as more news comes forward.

Evan