Monday, May 5, 2014

2 Months In Patient and 40 Days on the List

Hope has now been in patient for two months and on the list for 40 days.  I am surprised at how comfortable she is in the hospital.  I was expecting a really rough time when we were planning the Fontan for this summer.  I thought she would be scared, angry, and grumpy during the whole hospital stay.  At two months, she is doing so much better than I expected.  She is up and about, playing, making friends with lots of nurses, doctors, and various other people that stop by to visit.  She is still pretty shy around people she doesn't know or people that come in to talk to her.

Another surprise is my own attitude.  I was awful during prior hospital stays and hated every minute that we spent in the hospital.  Little things got on my nerves before and I would be grumpy most of the day.  This hospital stay is different for me too.  I know we are going to be here for a while, so I am making the best of the situation.  I am able to work in the room during the day and part of the night.  I take a few breaks from work to take Hope to the playroom...once in the morning and once in the evening.  I don't get mad about much at all and I appreciate everyone so much more than I did before.  The staff is awesome and tries to make life a lot easier and I appreciate all the little things they do for me.

I have learned so much in these last two months.  I have learned to lean on other people when I need help and a shoulder to cry on.  I have learned that people love to do things for other people...this is something I have done, but I didn't realize there were so many awesome people out there.  I am overwhelmed by the support we have received from family, friends, and strangers.  I don't think THANK YOU is enough for all the support, but know that our whole family THANKS YOU for everything!!!

Dr. Boyle (Hope's new doctor because she is in heart failure and waiting for a transplant) is in Italy this week for his wife's birthday...what a great guy!  We have been told many times that hearts seem to come available when Dr. Boyle is away.  I don't know how true this is, but I am hopeful that her new heart will arrive at the perfect time.  I am kind of hoping it will not become available until after Mother's Day.  I would like to think that the donor family will spend a great Mother's Day together.  I think about the donor family all the time and know that they will be making the most difficult decision of their lives.  I know it is a decision that cannot be easy to make and I hate knowing that another family will have to make this decision for Hope to live.  Please keep the donor family in your prayers as well.

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