Warning: rather long post - lots of reliving this day, three years ago
Today is a day that has a lot of memories. Before I begin, let me say that it is also the birthday of Beth, my daughter-in-law. She is such a wonderful person- a perfect partner for Ben, the BEST mom I have ever known, and an amazingly talented artist. I love you, Beth.
It is also a day that has some hard memories. I have sort of repressed a lot of them, but I thought I would write about some of them. Here goes:
Three years ago, on this day, Jacob was dying and we were thinking this was it. He had been in the hospital since October 26th, after experiencing rejection of the heart he had received on December 21st, 2004. This had already knocked us for the loop - the average lifespan for a person with a transplanted heart is at least 10 years. It wasn't time yet. He had been doing so well. He was a sophomore at Shorter and loving life. Richard and I had just flown home from Texas after seeing Tucker, our first grandchild. Jacob was away at school and we were sort of beginning to breathe a little -life was sort of good until he was admitted on October 26th. He, unknown to me, had become very fatigued and wasn't able to make it to class the day before. He thought he was getting the flu. His friends finally convinced him to call us and of course, we said get to the hospital.
To speed this up, he was rejecting his first transplanted heart. From that day until November 14th, he went through all kinds of vicious anti-rejection treatments. It was a horrible time for him and for us. We were all in shock, doctors, nurses, family, us - this was way, way too soon. When it was determined that the only alternative was another heart, we had to go through the whole, tedious process of being listed again.
One of the main differences this time, as opposed to the first transplant, was that Jacob was now over the age of 18, so technically, the medical staff was not supposed to talk to us. When the social worker came in to talk to Jacob about signing papers for the living will and asked us to leave the room, Richard and I both became unglued. We had been with him since day one of this journey and now we weren't supposed to be in the room while he answered the questions. Needless to say, we took it to the big doc and he took care of this. That's another long story.
But, I digress - as I said, I have a lot to say and have repressed a lot of it, but once I start writing, it's hard to stop.
So, back to Nov. 14th. On that day, Jacob was at the top of a list of heart recipients in a 1500 mile radius. It didn't look good- he was retaining so much fluid that when you walked into his room, all you could see was his stomach. The bed shook so hard from his labored breathing that you could see and hear it shaking. Our doctors had already talked to us about the possibility of putting him on a bi-vad or a biventricular device - basically, an artificial heart that would be attached to him. It was just a stop-gap measure until he could receive a heart. It would be an extremely drastic measure, but the only one that we had, unless a heart became available. Plans had been started to have this implanted on Nov. 15th at Emory. The team there had already begun the process. We just hoped he would live long enough to have the bi-vad implanted.
As the day wore on, he was quickly declining and it didn't look like he would make it through the night. Family was rushing back from Alabama, Washington, Texas and Connecticut. Some had already been here for awhile and we were all so weary and exhausted. Different friends and family would take turns helping me sit him up and rub his back. It would take two of us to hold him up - he was just that huge. I remember laying across his legs and trying to absorb the smell of them - I knew that this was it and I just wanted to remember everything about him - even how his feet smelled.
Ben, Beth and Tucker were trying to get here and we were afraid that Jacob wouldn't live long enough to see them. Finally, around 11:00 that night, Ben and Beth came in. Our wonderful friend, Kim,was keeping Tucker in the waiting room. Other friends were waiting with her or coming in. What would we have done without them? Especially Donna and Kim.
Richard, Katie, Ben, Beth and myself sat around his bed talking to him, saying our good-byes. Our doctors didn't think he would live long enough to even get the bi-vad put in. Then, suddenly, a young middle-eastern looking man in a lab coat came in and said, "My name is (couldn't understand the first part) Mohammed and we have a heart." He turned and walked off. We sat there in shock. Richard and I jumped off Jacob's bed and ran after him. We asked him to tell us who he was - there are SO many doctors in CICU that you just can't keep up with all of them - and to repeat what he had just told us. Anyway, he told us he was a resident with the transplant team and would be part of the group doing his transplant in a few hours.
We went from absolute despair to delirious shock. We told Jacob who was awake enough to understand. He also knew that he had to go through a terrible hard surgery and recovery, AGAIN. As the preparation was begun, we had to prepare him and ourselves to go through this again.
One funny story, we did have a chaplain intern who kept hovering around. Poor thing - she just didn't know what to say and was really clueless. Jacob sent his dad a text, while she was in the room, that said, "GET HER OUT OF HERE!!!!" We did.
Around 4:00 that morning, the doctors came to take Jacob to the operating room. It was such a moment - one I will never forget. It was in the wee hours of the morning, and in CICU, it is very open with the beds separated by monitors. Most children were asleep with a nurse or doctor by their bed. It was eerily quiet with just the sounds of monitors beeping and occasionally, a soft voice was heard. As we walked alongside his bed, he was awake and smiling. All the different medical and hospital personnel were smiling at him and giving him a thumbs-up. Several came over to hug us and him. It was very surreal - sort of like a parade in a silent movie. When we arrived at the operating room suites, we waited with two of the doctors - one of them was our Mohammed. We were sooooooo relieved, grateful and sobered, once again, that someone had to die in order for our child to live.
Meanwhile, we had to pack up and move out of the CICU room. Even though, he would be coming back to this room, everything had to be washed down. All of his and our personal belongings had to be removed. It was really pretty cool - they used some sort of foam cleaner and totally covered everything in the room with it.
Well, time to stop. Too many tears. Just hard to not relive this day. Just wish he was here to relive it with us.
I love you, son. You were so brave and so amazing to go through this not once, but twice. Thank you for doing this. I know there were many days you wondered if it was worth it. I am so thankful for every day we had with you.
You are always in my heart.
