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Jake

Jake
Right before the rug was pulled out from beneath us!

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!

1 comment:

  1. I love this blog!!!! It's beautiful!!!

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