Sunday, April 3, 2011

A Thank You

Keegan came home Friday afternoon from the hospital, yet again.  His blood cultures thankfully never grew out any bacteria.  Who knows what that fever was about.  We had a very reassuring discussion with neurology on Friday morning that convinced us that waiting to close the PFO does not pose any greater risk to Keegan.  Our transplant team said that maybe by September after next (2012), Keegan will be big enough to close the PFO during his usual annual heart catheterization and biopsy. 

Keegan has a GI appointment on Wednesday and a full cardiac work-up on Thursday.  We are anticipating trying him on the last available immunosuppression medication on Friday, along with a maintenance level dose of daily steroids.  Generally, the negative side effects from this medication manifest within the first 48 hours, so next weekend will be very trying for us.  More about that later in the week though.

For tonight, we just want to extend our heartfelt thanks to those of you who cyber-walked, donated, or actually went out and did 3 miles in Keegan's honor on Saturday for the Keep the Beat 5K.  Y'all raised $995 for congenital heart defect research and awareness in only ONE WEEK!!  Amazing!!  Thank you so very much.  Our actual total may be a touch higher.  We will let you know if it changes.  Every penny counts, and we feel so very blessed that people felt called to donate or walk in Keegan's name.  Thank you. 

I have to repost my friend, Lauren's comment from Saturday morning.  I was in tears reading it.  I know the strength and courage my son and so many other brave little ones show daily has changed me.  To hear how he has changed some of you gives me the determination to keep fighting for him and everyone affected by CHD and transplantation - today, tomorrow, and every day after that. 

Dear Keegan,

I didn't really feel like getting out of bed to run 3 miles this morning. I felt sluggish and tired and the coffee I was sipping in between sleep breaks wasn't doing much good. I seriously considered just staying there, warm and cozy, and messing around on the internet until I had to go to work. But then I thought about how much you and your family go through every day that you don't really feel like doing, or taking care of, or being part of when you would so much rather just be at home, snuggled up on your couch and suddenly my desire to stay in bed and not run a measly three miles seemed insignificant and lame. So I got out of bed. And I put on my shoes. And I thought about you. And I ran. And I felt better. I hope you feel better today too, because I only feel better thanks to you. Lo.


Katie said...

My daughter is waiting on a heart as well. Reading your story and watching your news clip gives me hope and a little fear. I will be praying for your sweet son and all he is going through. We live in Waco and are a part of the Dallas Children's Medical Center Waiting for a heart Transplant. I have so much I want to say and ask but for now know that one more person is on their knees praying for strength and healing for your whole family.

Katie Parker

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