Hospital Journal: Spencer--admit to discharge

Spencer has been home from the hospital for just over ten weeks now--almost as long as he was IN the hospital. We lived a lifetime in those thirteen weeks. The Caring Bridge blog that I used throughout Spencer's illness was a wonderful tool and a huge blessing in being able to keep family and friends updated on his status, and I'm so glad that I have that record. However, I want our experience to be documented here on our family blog as well. So my next several posts are going to highlight various aspects of our hospital stay. These posts are very selfish in nature as I really just want them on here for myself, but I'm also happy to share these memories with you. As things have started to settle into our new normal I've been able to take the time and look through all of the pictures that we took at the hospital, so here are just "a few" of them. Nearly all of the pictures are obviously of Spencer so my first post is just a chronological look at the different "faces" of Spencer as he went through so many stages.

This first picture was taken the night of October 5th. This was easily my worst 24 hours in the hospital. The doctors had informed us that afternoon that Spencer needed a heart transplant to survive. There were doctors and nurses in and out of our room constantly that day. Dr. Chavolla and Dr. Hubbard came in at one point and wrote a phone number on the board and then gave us very unconvincing smiles as they said, "That's just the number for the cardiothoracic surgeon. Just in case. We're sure that we won't need to call him. But just in case. If we write it then we won't need it." They left and Matt and I were like, "Just in case WHAT?" Then they were back again telling the nurses that the crash cart was just outside the door and Dr. Kaza's number was on the board. Then another big smile to us, "But don't worry, we won't need it." Eventually our brains caught up to what they were telling us--that they were going to put him on the ventilator the next morning but they were so sure that he would go into cardiac arrest when they did it that they were going to do it in the OR to be ready to put him onto ECMO. They also said that there was a very good chance that he wouldn't even make it through the night without arresting. Thus the reason for the crash cart and the surgeon's number in case they had to get him onto ECMO right there in the room.

After learning this information we had a meeting with about ten doctors and nurses including the transplant team. Lots of tears in this meeting, but mostly from the staff. We were in too much shock to really cry yet.

After the meeting I called my brother, Paul, and through tears told him how bad it was and asked him to bring the girls down as soon as possible. He did us one better and brought not only our daughters but also his wife, my parents, my sister and called my other two brothers and their wives as well. Matt called his mom and his two brothers and their wives also. They all showed up around 7pm and we broke every rule the PICU has by crowding in that room so that Matt and my dad and our brothers could give Spencer a priesthood blessing. We also took the girls into a private room and explained what was happening. We didn't hold anything back because we knew that they needed a chance to say goodbye if this was their last time to see him. A very difficult night.

The dog "pillow pet" was a gift from his sisters. He had wanted it for a long time and the girls were insistent that Grandma and Grandpa stop and let them buy it for him on their way to SLC that night.
This is not my most flattering picture. Earlier in the day I was self-consciously making my excuses to the nurse for my red, puffy eyes and he said, "Oh, that's just the PICU look." This is early in the morning on the 6th. We just could not get close enough to him that whole night.
After Spencer was put on ECMO, I didn't take any pictures for a while. I took one of his room but purposely made sure that someone was blocking him from my view. I was sure that I would NEVER want to see anything to remind me of him like this, ever. Then about one week later, Matt was home with the girls and I was at the hospital alone. It was later in the evening and I was sitting in the room watching him when the "Code Blue" alarm sounded for the room right next to us. A sweet little one year old girl went into cardiac arrest and the whole unit just erupted. The rooms on the unit are only separated by glass doors and a curtain so I very nearly had a front row seat to the whole thing. Within minutes the parents were standing outside of her room, right outside of my door. They were crying and hugging and then my nurse was crying. I realized that the baby had passed away, so I pulled my curtain shut and cried and prayed for those parents and prayed for Spencer. I felt so sad for them and at the same time I felt so grateful that it wasn't me. And then I felt guilty for those thoughts. After a few minutes I looked at Spencer and it hit me that at any minute it COULD be me and I had an overwhelming urge to start taking pictures. I realized that every moment could be my last to see him and I was crazy for not wanting to hang onto every second of his life.

I took many pictures that night and after, but I have given Spencer full veto power over what pictures I put on the blog. He has been very consistent in his wishes that he just doesn't want any "from when I was asleep". So this picture is the only one from that night that will go on the blog.

These are the camo hiking boots that Aunt Anneke bought for us. The nurses said we needed to get him some boots to prevent "foot drop" during the weeks that he was sedated. So we would put these on him for a few hours at a time throughout the day. It was really cute! I can't wait to watch him wear them out.
This picture was taken on October 27th. He was off of ECMO and onto the Berlin heart which meant that he could finally be less sedated and get off of the bed. This is from the first time that we got him up into a chair. It took seven people, not counting Matt and me.
This was October 29th and the first time that he attempted any sort of activity. It was amazing to watch him. It was so difficult for him to move his arms and hold the brush and his movements were so slow, but he didn't seem bothered by it at all--just determined to paint that star.
Thank goodness for DVD players! Mickey Mouse Clubhouse, Spirit: Stallion of the Cimarron, and How to Train Your Dragon are forever etched into the brains of our nurses.
Spencer was extubated (taken off of the ventilator) on October 30. This picture is three days later when I asked him to smile for the camera. What a sweetheart for even being willing to try!
Finally! November 7th was the big day. We had been telling Spencer about the Spiderman statue on the third floor and he was excited to see it. It took some real convincing and the right combination of staff to get permission to leave the unit, but we finally made it. His first big outing!
Showing off his first lost tooth! (November 19th)

Here he is being a stinker for the camera after Thanksgiving dinner. Matt's cousin sent this cute dinosaur box as a gift and he carried it with him everywhere for a few days.
November 25th, being silly with Dad. Spencer covered his hand with the silly putty that he made with Child Life.
Snuggling up for the night with the little bear that cousin Kate gave him. (November 28)
On November 29th Spencer got to go outside for the first time. We took him for a ride to the Angel Garden at the front of the hospital. We were all so worried that he would get cold so we bundled up his Berlin heart with blankets from the warmer. When we got back to the room his temp was up. Guess we did a good job!
Here he is on December 4th, playing with his dinosaurs on the floor of his room with Dad. Spencer's was a very unique situation. The Berlin heart had allowed him to get strong and healthy enough to do things like this. He was really no longer a CICU-type patient, but the Berlin heart is a CICU-machine. So they didn't quite know what to do with him. We were kind of creating new protocols as we went.
Going for a walk to see the PICU Christmas tree brought from "Festival of the Trees". He inherited a few items from that tree thanks to some nurses and their sticky hands. :)
Just having fun! (Dec. 10th)
So great to see these smiles again!! (Dec. 11th)
Here he is showing his excitement over the volcano that he made and erupted. (Dec. 13)
Even heart failure won't get you out of homework! Here he is reading "Hot, Hot, Hot" with his angel teacher, Mrs. Allen on Dec. 14th.
Showing off the lego truck that he made. (Dec. 15th)
December 16th, Transplant Day!! We had a few hours to kill before the surgery and he really wanted to go to the playroom. Here we are on our way back to his room.

Picture with Dad and Mom before his transplant surgery. Darn kid wouldn't smile!
Angel's Hands Foundation, based in SLC, gave Spencer this iPad so that he could watch movies, play games and do Face Time with his sisters. It was such a wonderful thing for him! The founders of Angel's Hands brought it to Spencer themselves and they were the most kind-hearted, wonderful men I think I've ever met.
Here he is on Dec. 20th, just four days following his transplant surgery, back to cruising the PICU/CICU on his bike.
Eating lunch on Dec. 20th while Dad lets the last three months catch up with him.
A visit and a Christmas present from Ty Corbin, Paul Milsap, Earl Watson and the Jazz girls of the Utah Jazz. (Dec. 22)
Going for a bike ride on Dec. 22 to watch the ice sculptors. They brought in blocks of ice and spent the day using chainsaws, chisels, and torches to create Santa in his sleigh with his eight little reindeer, plus Rudolph. So fun! This walk was a HUGE milestone because it was the first time since taking Spencer to the ER on October 1st that we went anywhere unaccompanied. I was at home with the girls, but Matt later told me that it was a very weird feeling.
Honestly I don't know how I don't have 1000 pictures of Spencer shooting a gun. It became a theme. He started out with a Nerf gun from Uncle Mike, then a marshmallow gun from Child Life, then a few more Nerf guns, then a bigger marshmallow gun, and finally a long rifle from cousin Calvin at the Felt family Christmas party. The entire CICU staff deserve medals for cheerfully humoring Spencer's coping technique of shooting anyone that walked into his crosshairs. Especially Eric, Michael, and Dr. Molina!
Just chillin' on Dec. 27th in his room on the 3rd floor.
This picture was taken Dec. 30th and it was the first time in three months that we saw his happy little face without a tube on it. What a journey!