Monday, April 19, 2010

One Week to T-Day

It was a weird feeling flying down to California the other day. In my mind, I equate flying somewhere with a fabulous vacation or at least guarantees of some fun away from home. I felt a little sad (and some might think me silly), as I said goodbye to my three cats, telling them I'd see them in a couple of months. Wow...a couple of months. That's a long time to be away from home. I wouldn't be a bit surprised if they refused to meow at me once we do finally return.

Waking up Sunday morning was strange, too. Usually we're scurrying around getting ready to head to music practice before church. After the last month of having lists and lists of things to do to prepare, I realized I have no more lists. I am prepared. I'm here. But boy, have I been tired. I dozed for about an hour before finally getting up at 8:30 a.m. - this is definitely sleeping in for me on a Sunday morning. I didn't sleep so well that night. As a matter of fact I haven't slept well for the last couple of nights. I'm not sure if it's the fact that I'm missing the familiar surroundings of my "comfort zone" back home...although I did manage to squeeze my favorite pillow in the suitcase...or the anxiety rolling around in the back of my mind knowing that because we are here, this is REALLY happening.

The weather yesterday was beautiful. We created a diversion for ourselves by having a little fun with Cayden, his Aunt Kristi, Uncle Paul, and his cousins Ian and Adam by going to the park and watching the boys all hit off the pitching machine. Even the dads hit a little. There's nothing funnier than watching grown men wiff the ball trying to hit with a boys's size bat. I didn't bat but had a blast running after some fly balls in the outfield in my bare feet. :)

Today was the beginning of a week of appointments and getting ready for the big day. We took Cayden and his 30 pounds of books (which cost us $50 in overweight charges on Alaska Airlines!) over to the hospital school on floor 3 of Lucile Packard Hospital this morning. He will go 2 hours in the morning and 2 hours in the afternoon, except Fridays, when they only have a morning session for school. Nice! I'd like that. :) They are so friendly and accommodating at the school. The great thing about the school is that it is located just outside the wing where Cayden will be located post transplant once he is discharged from the PICU. When he feels up to it, it'll be a very short "commute" to school each day!

My first appointment consisted of meeting with meeting my Social Worker, Miriam, in person after having spoken with her over the phone back home. There were many questions about everything from my growing up years to family medical history to my career, marriage, and being a step parent. One of the questions she asked me really caught me off guard. She asked about my relationship with Cayden. She asked if I had thought about how my relationship with him would change post transplant. I wasn't quite sure how to answer that. Would I expect him to somehow be more connected with me? For us to have a closer bond? I don't know. I absolutely love him, but I don't think I "expect" anything. To me, true love means giving without expectation. But it was her response that really threw me. She said, "What if something were to happen to him through all this? What if you went through with the surgery, and he didn't make it?" I about lost it at that moment. Now, how does one respond to a question like that...thrown at you like one of those homemade pipe bombs full of nails, created to do some serious damage? I felt sick. Not only did I NOT want to consider that question, I couldn't even fathom the possibility. After some silence, I finally responded to her. "I believe that Cayden has not fulfilled what he was put on this Earth to do. I know in my heart he has great things ahead of him. My trust is in God that He knows what He's doing and has big plans him." Downer number 1 of the day.

In between school and appointments, we zipped home to scarf down tuna melts, before I had to be back at the Hepatologist for a 1 o'clock and Cayden's 1:30 pre-op appointment with the surgeon. After getting "cut in line" at the check-in, which happened to be I swear the slowest check-in on the planet, I finally was seen about 1:25. The Hepatologist asked me a lot of questions about my health and noted that my weight was about .45% or whatever from being considered "obese". Are you KIDDING me?!! Ok, I might have a little belly pooch, but there is no way that I am that close to obese. Sheesh! Thanks a lot, buddy! That was downer 1 1/2.

After tapping around on my belly a bit, checking my heart and breathing and testing my balance, he shared the "grim statistics" with me. Out of the 100 people that come in and get to this point, only 15-20 actually choose to go through with the surgery. Both he and the Social Worker informed me that I can change my mind at anytime even up until the day of surgery. I emphatically told him (and Miriam) that I had no plans of changing my mind. Then, without warning, downer #2 was dropped into my lap. "You can expect to experience serious pain post surgery. Because of this surgery, you may not be able to get health insurance or life insurance. There is a possibility that your liver may not recover from the surgery, requiring you to have a liver transplant yourself. You may not get a liver right away and would have to wait on the transplant list for a new liver. Cayden has a special kind of disease. This is not a cure for him, and you are choosing an elective surgery. There is a 30% chance the disease will come back and attack the new liver." Have you ever seen kids when they don't want to listen to what an adult is saying? They plug their ears and start saying "lalalalalalalala". That was nearly my reaction at that point. I finally had the wherewithall to say, "Yes, I understand all the risks. I am willing to take my chances and am going to have faith that the 70% will prevail here."

Yuck, yuck, and yuck. I left there totally bummed out. I do know the risks. I also am fully aware of the risks if we sit around and do nothing for Cayden. I wouldn't have chosen to go through with this surgery if I didn't believe that Cayden's life was worth ANY risk that he and I must face.

After my appointment, I made the trek all the way across the hospital campus to meet up with Cayden and Dan over at the Liver Clinic across the street from the children's hospital. They were just finishing up. Cayden's surgery will be 8-10 hours. They have a tentative surgery time set at 7:30 a.m. The surgeon informed them that if a cadaver donor came in that day for another transplant patient, though unlikely, our surgery would be bumped to a different day. We also found out that Cayden needed to get several new vaccinations, due to the fact that he will be taking anti-rejection meds post surgery and will have a compromised immune system. We ended up waiting for 2 hours for the pharmacy to prepare the vaccinations. Cayden and I were both terribly cranky and ready for ice cream by the time he was finally vaccinated. I so love Baskin and Robbins. Ice cream is the solution to ALL problems!

Tomorrow it's off to have my breathing checked out...the Hepatologist saw something on my chest x-ray that he wants to have double checked before totally clearing me. Then in the afternoon donating 1 pint of my own blood for my surgery and finally meeting up with the Adult Living Donor Advocate, who will no doubt be another person who tells me that I can "change my mind at any time, even up to the date of the surgery"... At least I already know that one's coming!


  1. You are very brave and amazingly caring. I love you and admire you.

  2. Your husband just said it all. You're a rockstar!

  3. Wow, crushing. I don't know if ice-cream is enough! I think I'd just want to crawl into bed and pull the covers over my head.

    God keep your hope up and your heart encouraged!

  4. Stay positive...and I know you are! The doctors have to point out every possible negative thing. Plug your ears! We are all praying for you :)

  5. Amanda . . . you wow me! I will hug the kitties for you (the ones that let me). You are all so amazing. Love you!

  6. Amanda we are all cheering you all on! Of course they tell you the bad stuff - but you answered it perfectly - you made your choice and it's the perfect one for you - I'm in awe of you all.
    Linda Bringer

  7. Jennifer LaShellsApril 20, 2010 at 7:35 PM

    God loves to say yes when the world says no. We claim all Gods promises for you and Cayden. Can't wait to give Him praise and glory. You are in our thoughts and prayers.