A young girl that TJ got to know in the hospital is back in the hospital with a possible serious case of rejection. As I read the journal update from her parents I just cried. The fears of transplant can be incapacitating at times.
I cried because this poor innoent child was going to have to fight for her life, again. I've seen it and lived it twice now. It is an experience I will proabably have to face again. SUch is the life in transplant, at least in our transplant.
Yesterday I was freaking out because TJ was drinking too much from a bottle and too much of the Gatorade G2. Today as I started my day off with this terribel news it hit me like a ton of bricks. What the hell was I freaking out about. TJ is home with us and we were actually being normal. This is cause for celebration and love, not frustration and yelling.
I can't explain how my stomach rolls when I think the other family's situation. I'm so thankful it isn't us, then I feel guilty for thinking such an awful thought. I sit here and I picture Sue sitting at the hospital, it's almost midnight, almost time for vital checks.
Days like this remind me how lucky we've been, but it also reminds me how fragile our life really is. It reminds me how 1 phone call can change our lives forever and how we can endure anything for our children.
I pray the sweet Lily recovers and that this isn't a serious bout of rejection. I pray for my own son's health and pray that he stays healthy enough to remain at home with us.
Who Am I?
- Lori
- I'm a piano teacher, a wife and a SAHM with an amazing child. During the summer of 2007 our once healthy child fought and battled for his life in a way I could never have understood. The result was a Heart Transplant and a new life. This new life isn't always easy or fun. But it makes you thankful for a lot of little things. I'm trying to regain my identity and at the same time build a life and a family.
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TJ & Daddy, June 12, 2008
June 12, 2007 we took TJ to the ER and this whole journey started. This June 12, 2008, we celebrated TJ and his health. These are the loves of my life, TJ & my husband.
TJ & Mommy post tranplant
July 18, 2007 Back in my arms, it has been over a month since I held TJ. He received his new heart on July 16, 2007, this was taken on July 18, 2007. He was a 30 lb newborn. He had no strength and couldn't even hold his head up.
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TJ - June 15, 2007 What happened to my Baby?
Oh My God. How did we get here? I asked that continually. My healthy child was being kept alive with machines and we had no warning. June 12, 2007 we took him to the ER, he suffered a cardiac arrest and nothing would ever be the same again.
TJ with Berlin Heart, finally awake and back with us.
TJ finally is able to be awake and moving, it has been a month since he had his cardiac arrest. Here he is with his Berlin Heart able to play with a balloon.
1 hour before TJ's transplant
We need to occupy some time, Randy, Pap Pap and I sat with TJ, playing with Daddy's cell phone. We knew the team was already at the other hospital, we had 1 hour until they were going to take TJ to the OR. The nerves you feel at this moment as undescribeable. You can't cry, because you don't want to upset your child, but just thinking about what the docs were about to do really unnerved me.