Tuesday, April 15, 2014

Heart Buddies

The last few days have been a roller coaster of emotions for myself and several families that have spent a lot of time waiting for their gift of life.  I don't want to mention names because I don't know if the families would feel comfortable so I will use an initial for each of them.

W has been waiting for a heart for quite some time.  He waited at home for about a year and then was admitted to PICU to continue waiting.  He has been in since January.  A few days before we arrived, he went downhill pretty fast and had a Berlin Heart placed.  I think all these new devices are really cool and they do give kids more time to wait for their new hearts.  Yesterday I was talking to his parents and they were scared because he was not doing too well at all.  Hope and I have been praying for a heart for W for the whole time we have been at the Clinic.  I was so worried that I asked to be moved to Step Down because I know I would not be able to handle it if something were to happen to W.  This morning I went down to the Ronald McDonald family room and W's parents were there...looking happier than I have seen them in the whole time we have been there.  W got a heart last night!!!  It is amazing to me that he needed it so very bad and it was there.  I am so happy for him and his family and I pray like crazy that I can watch him grow up and run around and play with his brothers and sisters.  His parents are amazing and have been through so much.  Please keep all of them in your prayers as W makes a strong recovery and is out playing soon.

L has been waiting for a heart for a couple months as well.  He is a little older than most kids and didn't find out about his heart until he was 17.  He is a cute and fun young man and has been walking through the Clinic since he received his LVAD.  His mom is so sweet and tiny and the cutest lady you could ever meet.  I can't imagine how hard it would be to find out at 17 that you are in heart failure and I know his mom has been in shock since finding out.  After finding out this morning that W got his heart, I saw L's mom (we are now next to them in Step Down...we were next to W in PICU).  I had seen a post on Facebook, but I knew when I saw her face that they had received their miracle as well.  I am stunned at how fast things change and the whole atmosphere has been totally changed...overnight.

K is a cute little boy (Hope's boyfriend) that we have been through the Norwood and the Glenn with at the Clinic.  His parents are the best people you could ever meet.  Hope and K have been across the hall from each other during the Norwood and the Glenn and it was always my intention to have them get their Fontan done together as well.  You know what they say about best laid plans...Hope sure put a kink in my plans.  K had his Fontan last Wednesday and has done AMAZING!!!  He is in Step Down and Hope gets to watch him walk the halls and take lots of rides in the wagon.  Hope has been in the wagon too and hopefully we will be allowed to venture off the 4th floor sometime soon.

C is a little princess that has flown the coop (literally...she is now in Boston).  Her mom kept me company and spent lots of time playing with Hope in the PICU.  She decided to take C to Boston to get her heart repaired and I know they are all in good hands.  We love the Clinic and know they provide excellent care, but C is complex and Boston sees complex heart kids all the time.  I can't wait for C to come back and have a cool play date with Hope.

There are so many families that I have met and become close to during our stay.  I hope that as each of you pray for Hope that you will also say a pray for W, L, K, and C because they are all on the path to recovery and I know their families could always use the extra prayers.

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