Right before the rug was pulled out from beneath us!

Wednesday, November 30, 2011

Amazing People

I am amazed at how caring my coworkers are.  They organized a fundraiser for our trip to Boston. I am amazed and humbled. The out pour of love shocks me. I totally understand times are tight, all I could ever ask for is prayers, so this act of kindness is so overwhelming to me.  When you have a sick child it's expensive. When the specialist say go to another state, it's even more expensive.  We have been so blessed, and lucky.  I know as I type that.. some of you are thinking lucky? Your son is having open heart surgery,  You have exhausted all your savings...you're broke.. how are you lucky...  I'll tell you... I'm lucky because my little boy is alive...AND I knew I had friends but never realized how many friends... I am so blessed and so lucky to have so many wonderful people in our lives. From my co-workers organizing the fundraiser,  the friends and family getting the word out about it, my extended family urging to set up a paypal for donations, ( thank you Amanda for doing that), the out pour of help ( from letting me know what I need to wear to keep us warm , to making sure we are getting the best deal on our hotel room) and prayers from our facebook friends,  to a friend in Mississippi taking time out of his vacation to stop in to pray with us, I am amazed. SO many people have helped so much. I just want you to know I appreciate all of you and everything you do for my family, no matter how little you may think it is. It's huge to me.  Tonight, we will be attending a local Beef O'Brady's . Our supporters will present the waiter with a coupon and Beef's will donate 10% of every meal  accompanied with a coupon to our family for our trip.  At the urging of many people who are unable to attend but wanted to donate my step daughter set up a paypal account. One of our friends donated $10. 00 to our paypal account and was almost apologetic. All I could say was, are you kidding me, that's like you just spent $100.00 at Beef's ... We appreciate it... In short I just want to say Thank You... Thank you for you support. Thank you for being in my life...

Sunday, November 13, 2011

Is it too early for a Christmas wish?

   You know that feeling in the pit of your stomach, the one that makes you feel like you could just be sick any moment, yet it lasts all day. That's the feeling I have at this moment.  I just got off the phone with the hotel, making reservations for 22 days.  I've been putting it off. I think because finalizing the details makes it all real. Honestly, it's not like it's a vacation, this is a trip I wish I didn't have to be taking. Jake and I will fly up on the 6th. We can expect about five hours of pre-op tests on the 7th, and the surgery on the 8th.  They said usually the hospital stay is about 4 to 5 days, which is a lot better than the 8 to 10 we expected.  However, he won't be able to fly home until after the two week post op, which is two weeks after the date he is released from the hospital. Which brings us home after Christmas.  So although it will be sad being away from family for Christmas, we couldn't ask for a better Christmas gift than getting Jake better.  If I could wish for a Christmas Miracle it would be that this surgery will bring us a much healthier 2012. Research says that 30% of the patients receiving Septal Myectomies do not have a better quality of life....  My Christmas wish is that Jake doesn't fall into that percentile.  I want him in the 70% that improve. I know the surgery is not a cure,  but if I can't cure him what more could I ask for than better quality of life? ...(I know what are thinking.. What's all this glass half empty kind of thinking... 70%... surely he will fall into that.... but from what I read only 25% of people with  HCM need a myectomy... he didn't fall into that 25%.)
   So truthfully, I'm worried about the recovery time in the hotel.  Everything I have read says he will be more comfortable sitting/sleeping in a recliner... and we will be in a hotel... Last time I checked, hotels don't have recliners. I just want him as comfortable as possible.
   We will be in a different hotel than we usually stay in, this one is a bit farther away. It's a lot cheaper, has a free shuttle bus to and from the hospital, and has free breakfast.  It's not as close to everything, but I don't think we will be leaving the hotel room except for the visits to the hospital. Even if I thought I could leave Jake's side for a minute, the extreme cold weather would make me think otherwise. Do we even have clothes that will keep us warm enough (Hello Florida girl here! ) ?
   My head is spinning with a million stupid thoughts...  Stupid things, like packing as little as possible for the trip because Jake won't be able to help with the luggage on the way home, getting shoes that he can slide on, and button up shirts.  Stupid thoughts adding more stress to my plate like in 23 days, I will be leaving my daughter for 22 days. Never been away from her that long. I know she will be fine, my husband and parents will be here with her but still, it's a long time to be away from her.
   On a positive note, Jake lasted the whole night of Amanda's wedding. It was nice to relax, and enjoy the moment.  I know he was tired. But he was a trooper. It was a special occasion, and I know he ate more chips than he should have, I figure an occasional slip from the strict sodium intake restriction can't hurt too much.... I know if I research it to find out the risks involved with that, it would drive him crazy ( as well as myself) ... so I won't research that ...YET!