Tuesday, January 14, 2014

Just when you think things are going well...

Lately when I take Hailey places where people who haven't seen her in a while see her again I hear, "She's doing SO good!!!" She is, but hearing this repeatedly has maybe let me let my guard down a little. In December we went to Utah to see Hailey's cardiologist and she wanted Hailey to use a Holter heart monitor for 24 hours. We've done this several times. The first was when we found out about the Wolfe Parkinson White Syndrome, the second we were told the WPW is still there, so what I heard about this third time caught me completely off guard. I was expecting to hear the WPW is still there and they will still continue to monitor, which it is and they will but now there is something more...

Hailey has now developed a 2nd degree heart block. Long story short, at times her heart doesn't complete the beat. This happens at the most when Hailey is asleep. They said at 2am it really pronounced. It can cause dizziness, light headedness, fainting. Kind of like low blood pressure. She has been getting tired lately but I thought it was because all the activity that she does, maybe it's her heart. Instead of her being monitored every year we will now see her cardiologist every 6 months. If/When this gets worse, to the point where we have to interfere, Hailey will need a pacemaker placed in her heart.

This sits funny with me. I don't know quite how to explain it without sounding cold or uncaring. This disease is horrible and towards the end of the disease things progress to a permeant vegetative state of the person with the disease. My child will be trapped inside her body. I know I wrote about this next part before, but it sticks with me. When Hailey was at the hospital the trip before her g-tube was placed, I saw a child with leukodystrophy. He was in that vegetative state, in his wheelchair, with a feeding tube and with a ventilator. When I pictured how that could be Hailey one day I lost it. I don't want my child to "live" like that if that is living. I don't know if that child is or was suffering but me personally wouldn't want that for MY child. I know with Leukodystrophy children have heart issues. I guess eventually there isn't enough white matter for your brain to tell your heart to beat as it should. I think that's the final sign things are ending. That's the point where you have to make a decision as a parent. Is the question "Should I let my child go?" Or is the question, "What's best for my child?" Those are 2 VERY different questions. We, as in me and Josh decided to place a DNR (Do not resuscitate) on Hailey. My signature is the one that is on the paper, so I feel like it's actually me deciding this will take effect even though we did this together. This is all my opinion and my thoughts. I know there are people who will have to make this decision people who have made this decision.

So if Hailey is doing as well as she is now, but her heart is getting worse, what do we do? It's not that we wouldn't do the surgery, but it's something that makes me wonder if I'm interfering with the natural progress of the disease. Am I interfering when I take Hailey to therapy? Is this apples and oranges?

I think for now I need to have it in the front of my face that even if Hailey is doing very well right at this moment I can't let this catch me off guard again. When I told Josh what the Dr. had said he had to remind me that we knew that this was a possibility for Hailey. Why did hearing it, make me feel as if I was ambushed? Maybe we are doing too good of a job at living life and keeping busy, and having fun? Now that we know about the heart block the Dr. is writing up her report for us to share with the school and her therapists. She told us that if Hailey says she's tired BELIEVE her and make her rest. She still can do therapy, after all we want her as strong as we can get her.

She might not be able to walk our entire mile at the Walk for Wishes event, but toward the last few feet we will allow her to cross that finish line on her own and cheer her on the whole way. Another reason I want as many people on our team as I can get!