We arrived at UCLA Ronald Reagan Medical Center on Monday Yippeee…
The goal was to get Aaron to UCLA, we have been told UCLA is the hospital that Aaron needs to be to perform the high risk double organ transplant. Aaron spent the majority of the summer at UCSF, in what the Tanner family calls our “home away from home”.
It is second nature that doctors, nurses and social workers refer to us by our first name and we do the same. UCSF has been good to Aaron and the balance of the family, yes we have had bumps, hick-ups, and snags along the way, although we have always been able to work through these issues keeping our vision in front of us.
Thank you all!
Before I go any further I need to thank everyone for all of your support, thoughts, prayers, and support that you all have given the Tanner family. Our ordeal has been much more difficult than we could have ever imagined and has not started out the way we thought, with the unspoken support of immediate family and taking on much of our responsibilities back home.
Our New Home
Aaron’s new “home away from home” is on the 5th floor of the UCLA Mattel PICU Wing. Although this is exactly where we need to be, Aaron still is going through a battery of tests. They are going to try to evaluate Aaron’s case with the complete transplant team on Tuesday of next week, permitting all labs, x rays, scans, MRI’s and any other reports are gathered to be presented and recommendations are given.
When and if the transplant team accepts Aaron and takes on his case the insurance company will be handed a packet for their own review and the final answer, for the lack of a better word I refer to it as the insurance provider gets to play God for a day. Regardless of what these professionals determine with our technology of our century, there is no dollar amount in the world that would be too little or too big, if it means Elizabeth and I could spend another day or longer with Aaron. We know this all to well.
We have had a couple of very intense meetings with doctors this past week; it has been very stressful on both of us. Wednesday night, we met the surgeon that would perform the actual heart transplant if Aaron’s case is accepted. He went through each step explaining what he would have to do to a new heart to make it work for Aaron.
Aaron’s Condition
Not only would Aaron receive a new heart the surgeon actually would have to do some reconstruction on the new heart to make it work for Aaron’s anatomy, since this is a double transplant on a congenital condition lowering the chances for success. I’m intentionally not sharing the odds of success, Aaron’s case is very complex and odds are lower than we would have expected.
Just before we met the Transplant Surgeon, we asked the nurse if we could meet with a doctor to see if written orders could be changed to allow Elizabeth and I to take Aaron to the playroom unassisted since the floor was very busy.
Since the doctors were all very busy, they sent in a new medical student to speak with us. In the middle of his excuse that he was giving us, the surgeon walked in and introduced himself. Needless to say the medical student took a step back and listened in on our conversation with the surgeon, of what Aaron has gone through in his life, and what he was about to go through and the repercussions that follow.
None of this is new to Elizabeth and me. I watched the medical students facial expressions change with every word that the surgeon spoke. When the surgeon left the room the student apologized that he did not even have the authority to write orders or even allow us to accomplish what we wanted.
I think after what the student listened to he realized that the front that he tried to put on for us was pointless and possibly felt sorry that Aaron was unable to go to the playroom that night. The very next morning the student returned back to the room and referred to me as Mr. Tanner, and asked me if there was anything that he could do to help out with his nurse, so she could try and get Aaron to the playroom. I would imagine the night before was a surreal moment for him.
Staying Focused
We have been trying to focus on the positive and what the end result will be. Elizabeth can’t hide her worrying, I have seen her break down more lately than not. I think a lot of it has to do with us all being so far from home and being in a new hospital where we do not know anyone, and watching Aaron adjust to all the new faces.
I have to be Elizabeth’s ROCK and stay strong for her and give her a shoulder to lean on when she needs one, who is my ROCK? Every time Aaron gets medication, sedated, poked, prodded, turned twisted and bent sideways, it makes me realize that Aaron is my ROCK. Aaron has gone through more in his four years of life than most of you reading this — including myself will go through in our entire life.
The Tanner Family
Many people ask me how do you pick your head off of your pillow in the morning and function, my responsibility is I do it, for my children. Not only for what Aaron is going through but for what the rest of my children are dealing with. Nicholas is a freshman in high school this year, and his younger brother Noah started 3rd grade.
This all took place with mom and dad absent taking care of the youngest member of the family; once again we could not have done this without the support of our immediate family and our wonderful community praying for us.
Monday morning I fly back to the Bay Area and will be leaving Elizabeth and Aaron behind. My fear is that I’m leaving them behind to deal with so much more everyday. More than likely Elizabeth will get a visit from the doctors in my absence, giving her their decision if they will take on Aaron’s case. Upon arrival we were interviewed and questioned a million and half times by every doctor and social worker involved. It is a common thing – what they are doing – but the biggest issue is whether or not we can deal with what a heart and kidney transplant patient entails.
We are currently between a rock and a hard place, we don’t make enough money to afford to pay outright for Aaron’s surgeries although we are told we make too much to get the financial support we need. When and if Aaron receives his transplants it does not stop there.
Aaron will take medication for the rest of his life and have regular doctor’s appointments. The medical expenses will continue, you can imagine the stress it brings when you’re watching your child suffer.
Only one parent can stay in the PICU room with Aaron and the only other sleeping arrangements that the hospital offers is empty waiting rooms, first come first serve. You have to mark your territory early. I often go to bed late and get up early. When I get up early this is my time, to think how do I balance work, Aaron & Elizabeth, Nicholas & Noah, medical bills and anything else that comes to mind.
Our New Surroundings
UCLA is big and beautiful; I have spent time walking in the halls, stairwells, elevators, bathrooms, cafeteria, and benches outside. While I adventure through these areas the one thing that that I observed and learned is that everyone is so busy and has a agenda, I observed doctors walking in a group walking down a hall a couple of them were talking about how to sync their PDA’s to their computers others were talking about patients, the one thing they did not see was me.
I took the elevator down stairs to the cafeteria and sat outside and drank a cup of coffee and ate a bagel, I observed many things –doctors and nurses entering and exiting the hospital on their cell phones, PDA’s or talking with co-workers, maintenance workers, pushing carts — all with a mission or destination in mind.
I noticed there were flowers and the green landscaping. It just dawned on me; I took a moment as the old Clichés goes “I stopped to smell the roses.”
When I was done with my coffee I went upstairs to see if Elizabeth and Aaron had awakened. As I walked down the hall a picture on the wall caught my eye. It was a picture of penguins on an ice berg, and then I just realized something — the hallway had several pictures of penguins on both sides of the walls head to toe.
I just did something twice in the same morning that I have not done in such a long time, I took time out of my day and “I stopped and I smelled the roses.” Realizing that everyone has very busy lives, between work, grocery shopping, basketball, baseball, soccer and many other chores we all need to take time out of our life and “smell the roses.” By not doing this you do not realize what you are missing.
Once again thank you all for your acts of kindness, carpool, events, phone calls, E-mails, support, visits, reminders not to lose our faith, and the power of prayers, (Jackie thank you for keeping me on track). I have to especially thank the kids Aunt Kaylena, Uncle Scott and Grandma Sandy they all have stepped in and helped so much and are keeping home life as normal as possible for Nicholas and Noah.
Scott & Kaylena are expecting their second child, our Nephew and Godson baby Jack is going to be a big brother. This is a very special time in Scott and Kaylena’s life they all have put there lives on hold to help family.
Special thanks and prayers to you all, and God Bless
Mark and Elizabeth
