Things have been going so good. TJ has been doing so many things and getting stronger and stronger. We had our clinic visit this past Thursday. I always get nervous leading into these days. In one fail swoop they can take my optimism and change it to gloom.
His heart function looks good and he's gained a ton of weight, which I've been worrying about. They were very happy about the weight. I guess he's been sitting at the same point for a while and should have been gaining.
The only real downer, and it hit me hard, was his blood work. I really hoped it would be better. He's been doing so good. But nope. His LFT's (Liver Function Tests) were elevated, again. i really thought they would've been down. So now we have to consult with the liver docs again.
This is a second round of elevated LFT's for TJ. They don't know if it's the medicine, a virus, or liver damage. Of course any time I hear any little thing my mind jumps off the cliff. I can't even help it. My mind starts spinning worst case scenarios. I never used to do that, I've learned it from this experience. My child just doesn't catch a lot of breaks.
That was Thursday. Friday I spent the day worrying about the docs calling. What were they going to tell me. How bad were things really.
They never called.
Part of me was pissed. I spent the day stressing, it's my kid, why the hell wouldn't they call. The other part of me knows. His numbers really aren't that bad. They aren't going to do anything except maybe some more blood work on Thursday. He's getting blood work done anyways, they may just add some tests.
So the no call isn't a big deal to them. Nothings really going on. So I've gone from stressed and worried to complacent and accepting.
This is TJ's life, it's our life. There are going to be good days. The days can be good enough I can forget what he's gone through, that's amazing.
But there are always going to be appointment days and blood work that brings it all back home again. I don't think I'll ever be relaxed on those days. It's just too easy to have your life blown out of the water. You can go in thinking everything is OK and be told absolutely the opposite and be admitted for tests, treatments, procedures...
I find that as we are moving on from transplant that I'm going through somewhat of a mourning process. I'm mourning the loss of the life I thought we'd have, the life I thought my child would have. It's hard for me to imagine what his life is going to be like. The constant threat of illness is always hovering around him.
I wonder if his transplant will last 20 years, that would be a long time for a heart. That would put him in his early 20's with a new transplant. I wonder if we'll be able to afford a second transplant and if it would be successful. I wonder if he's going to have children or live to have grandchildren. Things I always took for granted, now I can't be sure. It makes me sad.
People say live for the moment, enjoy every second I have with him. Well, that's not good enough. I want a lifetime. I want him to experience everything, I don't want him to have to miss out on anything. He won't be able to play certain sports or engage in certain activities. Close contact is a no no and impact kind of activities aren't recommended. What will he get into, will he be satisfied or will be angry & resentful that he can't do things?
It will be interesting to see how he grows and what he grows into. I just pray that he has a long easy period of health. I've gotten used to the summer and have enjoyed it so much, I want this continue for years! I'm a selfish person, I know.
Therapy is probably in our (my) future. So many things have happened to us that I think it can help us cope and move on. When everything is flying at you, you don't stop and process what is really happening, you hang on and go on autopilot. After, like now, it all comes back to you. It hits you over and over again.
I'm OK. I know sometimes it doesn't always sound like it, but I am. I'm pretty aware of when I'm acting & thinking a little unrationale, I try to laugh about it and wait until my sanity returns. No sudden movements, that's my current motto.