Tuesday, November 22, 2011

So much to be thankful for...

With Thanksgiving just around the corner, I have to remind myself constantly all that I truly am thankful for. This past Saturday made certain I be as thankful as one can be.

Andrea was taken to the ER by ambulance this past Saturday from what we would later learn would be an episode of a vasovagal syncope.

She had been fighting signs of a cold earlier in the week and by Friday it hit her full-fledge. She went to bed at 11 and didn't get up until 1 the next day. I asked her to start her sinus rinses and salt gargles, but she said she was ready to jump into the shower. This girl takes scalding hot showers and that in combination of not feeling well, having slept for 14 hours and gotten up with no food or drink for that long caused this vasovagal thing.

She felt dizzy while in the shower and decided to sit-down in the tub, but there was about 2 inches of standing water because our drain has been plugged. Being the "beyond her years" kind of girl, she thought to herself..."I better get out, if I faint I could drown." So she got out, held on to the sink counter top and called for me, then said "I feel faint". That's all I heard and then three loud thumps!

I'm sure you can imagine how I felt. I screamed for her and when I tried to open the door I couldn't because her body was blocking the door from opening. I screamed her name and started crying. She came to and was able to sit up long enough for me to get in, hug her and ask what was wrong. But before she could answer she passes out again. Luckily we were already on the floor, so I just kept holding her. She came to quickly and I told her I wanted to get her to her bed to lay down. So we gently stood up and down she went...like a sack of potatoes. I couldn't hold her so I went down with her, laid her on the floor and covered her up with a towel.

Jeff was downstairs watching football. I ran to the door, opened it and screamed for him to come be with Andrea while I dialed 911. He shot up like a rocket and went to her. Meanwhile, I've dialed 911 and they don't answer. It rang at least 8 times and no one picked up. I hung up and screamed "911's not picking up the fucking phone!", as I ran to my room to get dressed. That's when our phone rings and it's 911 calling back. I told them what was going on and they asked a bunch of questions to make sure Andrea was breathing. By this time Andrea had regained conscientiousness and asked if I could dress her. Jeff stayed with her on the bathroom floor as I dressed like she a two year-old again.

The paramedics arrived and took all her vitals. Everything seemed fine. They said they could take Andrea to the ER or we could call the doctor and ask him what to do. I told them to take her and I would ride along because Andrea fell the first time from a full standing position. She hit her head on the bathroom sink and on the way down she hit the door and also bit her lip. I wanted her looked over well and quickly and didn't want to chance having her faint again with mo medics around...so off we went.

3 hours later, more vitals taken and a full bag of fluids administered by IV we were back home with instructions for her to rest and take pain meds if needed. And I swear I aged like 10 years. I wanted to vomit and my eyes have been twitching ever since. BUT I'M THANKFUL, SO VERY, VERY THANKFUL because I still have my baby girl with me to love, hold, kiss and cry with. Sigh!

Not a happy camper...but thankfully all turned out well in the end. Whew!



Thursday, November 3, 2011

Great news...yet feeling kind of numb!

So yesterday (11-2-11) we–and I mean we as in the entire world–were hit with the news of a new drug that will treat the actual defect of cystic fibrosis persons that carry the G551D mutation. 

I immediately found the news clip online and posted it on facebook. I found a couple of news articles and posted it as well. 




I posted about how huge this was and wanted to share it with everyone. And then the outpouring posts of support by family and friends came rolling in and I felt nothing. Absolutely nothing. I realized I was posting about it because it was something I should just do. I wasn't even feeling any emotion about it, I just did it. And I've been racking my brain wondering what the hell is wrong with me.

I'm not quite sure what it is but here are some thoughts:
  1. I've known about this drug for years. I'm guessing almost 7 years ago I started getting emails about it and reading about it when I'd do some CF research on my own. I would skim through the announcements and delete it quickly. I remember thinking this was just the beginning and I was not going to get my hopes up because so many drugs never make it to the final stages of testing and getting FDA approval.
  2. The drug that is working right now is only for a very small percentage of CFers...4% to be exact. This is a rare mutation and it is one that Andrea does not have. So this drug will not help her.
  3. I'm afraid that after all the excitement winds down, we'll get hit with something we don't want to hear. I know this is 'the glass is half empty' way of thinking, but it's how I'm feeling at the moment.
  4. I'm remembering a friend that lost his life to CF 8 years ago and I found out through his widow that he carried the G551D mutation. I feel so sad that this wonder drug didn't come sooner.
My emotions are starting to surface though. Slowly but surely I'm able to let the tears out and accept the good that all of this is. It took a third article I read today for my eyes to finally weld up with tears and it was a huge relief to let it all out.

Friends have been sharing the news too and that makes me cry. Two of them (that did more than most would ever do) are recalling the day they shaved all their hair off to raise money in honor of Andrea and I'm finally able to bawl recalling those days as well. I mean look at what all the hard work, volunteering, monetary donations have accomplished...GENE THERAPY! And I owe it to everyone that gave and gave tons over the past 10 years.

A friend posted on facebook the following "How do you thank someone for doubling your child's life expectancy?" The answer: I don't know, but I sure as hell will do so for the rest of my life! 
THANK YOU!!!