Saturday, September 9, 2017

The long awaited decision

So a while back, in the middle of August, I played a little tug of war with a little PCH. I have not been this frustrated in a long time. We had our surgery consult June 16th, I waited, and waited, to hear final word of what was happening. Yet, it never came, even though I called and left countless messages. Finally PCH called and said that Dr.R wanted us to come in, I was thinking we were finally going to find out what Dr.V decided. Well we did! Dr.R walked in and the first thing he said was, "When is surgery scheduled for?"

Chris and I looked at each other baffled. I quickly regained my wits and countered, "Oh, so surgery has been decided. How wonderful to be finally told of the decision." Dr.R asked if we had not been contacted and I confirmed that we hadn't. He quickly excused himself from the room, only to return with the surgery team. They came in and apologized and said that someone would be in contact with me within a week to schedule her surgery.

Well a week came and went, we heard nothing. I waited for a week longer and then finally called. I was then told, they had no confirmation that Lily was due to have surgery and that they needed to hear from Dr.R and Dr.V before we could schedule anything.

I wish I could say I held my temper, but I didn't. I asked if she was a sever case if this would be happening. That I know that she is stable for now, but just a year ago, we talked that we might have a few years before surgery. 6 months later, her heart declined. I told them she is a moderate case, and I understand that there are other children that take precedent over Lily's case. I did apologize to whom I was talking to, letting her know, I know it wasn't her fault this was happening, but I needed her to see my side as a parent.

Lily's health is declining, she grows tired quickly. She is almost always cover in sweat, even when she is sitting doing nothing. Her cough has returned and is not as bad as it was, but it is getting wet again. I see her run around and play, but she always ends up over doing herself. It breaks me to have to tell her to sit down or sit out.

So with all that information that I relayed to PCH, they finally called me back, 4 times in one day. We set up a CT scan, so we could get pictures for surgery. Before setting that up, we put in for a tentative surgery date of September 25th.


Waiting for her CT Scan


Lily and her daddy, he was talking with her about being brave, she had just found out she was going to need 2 IV's


Child life came in and gave her an iPad to help take her mind off of things, while she was getting her IV.


Me and my sweet lady, taking snapchat pictures, to pass the time, while we waited to be called back for her CT Scan. 

Now we wait for surgery. We will be closing her residual VSD, trying to fix the leak around her mechanical valve, or replace it all together. And then, see if we can do anything about her coarctation, it has mild stenosis on the back end of it, but it is in such an odd spot, we aren't quite sure how to address it. 

I forget how to do this, how to prepare my daughter and prepare myself, for surgery. How do you prepare for something you haven't done since your child was 2. We had a team of doctors we had known since before Lily was born. Now we have a surgeon we know nothing of. I have done my research and I know he is a great surgeon, but he doesn't know Lily, he doesn't know the tricks she throws in surgery. Dr.C and Dr.P were always prepared, they knew she threw curve balls. 

Chris and I both on edge about this surgery. I know it is in the Lords hand, all I can do is pray, pray for comfort and ease, for strength so Lily doesn't see how scared I am. Any words of wisdom would be wonderful right about now. 

Until the 25th, I will enjoy all my time with her, take plenty of pictures, and make great memories. You will hear from me next on the day of her surgery.