My kids were able to visit daddy tonight and Porter posted this picture with the comment “I could never ask for a better example of how to be a man.” He has always had so much respect for his loving and wise father. I hope it wasn’t too difficult seeing him in this condition.

His billiruben number increased from 7 to 9 overnight and anything over 5 is dangerous. We held off the TPN for two nights to try to give the liver a break but he will go back on tonight to get his strength back.

He was not able to lay flat for the scan they needed to do today. He said trying to lay flat felt like an elephant was stepping on him. To avoid torturing him further, they decided to do an ultrasound instead. I’m not sure what they are looking for but just so grateful that they are still looking and not giving up on him. They have been wonderful in his care. Amos’s dad has been really impressed with the hospital’s excellent care and said we should get some results on the ultrasound tomorrow.

We are anxiously waiting. I got to talk to my sweetheart today and I’m really missing him. I’ve had some anxiety for him today but our faith is holding strong of a miracle in the works.

 


Amos’s friends stopped by to tell him it’s game day at Gilbert High. Looking back on every Friday night this time of year for the past 10 years, Amos has always longed to be at those Gilbert High football games. I know he’d much rather be there than in the hospital.

Evie Clair had a fun day back at school. They were so excited to see her make it to the Semi-Finals and are cheering her on through the end. I believe NBC is replaying her episode right now if you want to catch it. Her friends organized and encouraged people to vote and even made a few banners to congratulate her.

Amos started the day well and slept really well last night. They were excited that he hardly pushed his pain pump at all in the night. He woke up this morning and ordered breakfast. I stayed the night with him and was freezing because he needs it cool. His parents and brother came early and planed to help him take a walk to the end of the hall.

He made it on the walk but wasn’t able to keep his breakfast down. 

We knew it was because he was filling up with fluid again so we campaigned to get them to drain him. When they tried, only a small amount of fluid came out. They learned that he has several other pockets of fluid in his abdomen that can’t be reached through the existing catheter so they pierced his abdomen in 2 other places to try to release the pressure build up.

The main issue today is that the low functioning liver is causing not only the extreme swelling on the legs but many other issues. The answer may be to get him off the TPN and get him eating. I learned today that the TPN is hard on the liver. If we can get him to keep food down so his nutrition doesn’t suffer and cause more fluid in the abdomen, we can get him off the TPN and get his liver function back to keep the fluid out of his legs.

We hope to find the right balance and get him out of here and back home by Monday. We decide against the rehabilitation center because they may not be able to deal with his medical issues adequately. He feels good about being at home and we have lots of family members to help as Evie and I will be heading back to LA in the next couple days.

Dr. K says we can talk about clinical trials as soon as we successfully get Amos off the TPN. I believe the TPN saved his life but it was never meant to be a long term solution.

Char said she would break him out of here to go to the game if he wanted. We can always count on her for some excitement.

 

We sent my kids off with Ken and parted with a couple of my sisters before we had a music consult for Evie’s next performance. We then headed to the airport where Evie was stopped by several people who recognized her from the show.

We made it back to Arizona for a beautiful reunion with Amos bringing our love to him from the entire staff of America’s Got Talent. We were both so happy to see him after 10 days away.

Dean,Phoebe,Tom and Sandi have taken such good care of him today and I thank them. I’m so happy to have some time alone with my sweetheart tonight. He requested that I sing to him and it put him right to sleep so now I have a chance to write the blog.

I found his condition to be similar to when I left except that now his legs have swollen up to about double their size. They said the liver is responsible for managing the water passing through cells and it isn’t keeping up right now. The doctors are working on some solutions for the swelling among other things. Amos is trying to get off the pain pump. They were doing a procedure to drain his lungs yesterday during the live results so he had to watch it a little later. His reaction video has gotten around today. It was so tender.

They aren’t willing to release him to go home, but wanted to send him to hospice. Thankfully his oncologist came in this morning and told them that he isn’t ready to give up so hospice isn’t an option. They talked about a rehabilitation facility as one possible solution for extended preparation to get ready for more treatment.

This battle looks like it is going to be extended and I think he is up for it. I hope my heart is as strong as his. I knew there was something special about him when we met 20 years ago and I have been privileged to see the magnitude of his character. I have learned so much from him. I sent him a text on our anniversary that said something about how the past 20 years have been the best of my life. His response was about how the next 20 years together would be even better.

We don’t know when Evie has to be back in LA but for now we will savor the time we have together. My dad is taking good care of my kids and I’m thankful for him.

The nurse is now here to wake him up for vitals so I’d better go.  Love you all.

Amos was able to watch his sweet Evie advance to the Semi Finals of America’s Got Talent tonight from his hospital bed. This put some light in his eyes tonight. He and grandma and Aunt Phoebe all cheered her on and I was so thankful to be able to see his reaction.

I’m also so thankful to the producers of America’s Got Talent who consider every detail and will let us go home tomorrow to see Amos. I am so excited to see him for how ever long we will get to be home.

This experience on America’s Got Talent has been extraordinary for our family in many ways and we are filled with so much gratitude.

Thank you all for voting for her yesterday and jumping on again today to save her.

We will bask in the glory of today and not talk about medical stuff right now.

My kids went to the beach with aunts, uncles and cousins today while Evie was show prepping all day at Dolby Theater.