I take no responsibility for the writings contained in this blog! You will have to blame "Ambien"- my best friend, when sleeping on a strange chair they somehow reconfigure and then call it a bed! There is a great chance that I won't remember a single word I typed here tomorrow morning. I'll come back and check the facts when I'm more "sane" though... so you can read knowing that I will ultimately protect you from the completely outlandish statements I might make tonight...
It has been an incredibly long day... to put it mildly! I am typing right now, from the same ICU room where Rachel recovered following her first open-heart surgery. Strange.... almost as if time has stood still! At least in this place it does! But you're probably not reading to hear about the hospital... I'm bettin' you're here to find out about Rachel's cath.... Here goes!
Rachel handled the heart cath beautifully today! She had cried some of the saddest tears you've ever seen when I told her we were coming back here for her heart cath, but you would have never known it, looking at her now! She was the perfect little patient! A delight to everyone that she came in contact with today! And amazingly, she's done it all with zero translation from our Chinese friends! Her English skills astound me after being in America for only 5 months!!!
Unfortunately, the catheter results revealed what the cardiologist had feared. Pressures are too high and the single ventricle too weak to support the second open heart surgery she needs (the fontan). There is still much discussion needed between the cardiology team and for us - much time spent in prayer with the Great Physician, but the decision was made today to go ahead and list Rachel for a heart transplant. She is still able to function and live a "normal" life, so we will return home tomorrow and begin a new season of "waiting" in our lives. I can't really imagine what that wait might look like and there are many emotional issues that I will need some time to "process". First and foremost is understanding the realities surrounding a heart transplant. One parent will loose everything... while we receive an indescribably beautiful gift from their hands.
We are so grateful for the outpouring of love we have felt through so many of you! Thank you for being vigilant in prayer on our behalf. God has heard, and has responded in ways that astound me! Just today, I was overwhelmed by the absolute peace I felt... and joy! Real joy! Strange emotions in the really hard places! But I am discovering a God who meets His children in those very places, in sweet, overwhelming ways! This is a strange road, indeed... but one I wouldn't trade for the world!
Our hearts and prayers have been with Rachel and your family all day. Sending much love from our family to yours <3!ReplyDelete
Continued prayers for peace and comfort for Rachel and your entire family.ReplyDelete
You all are in our continued prayers - please know how very much your story has impacted our lives. My natural reaction when looking at files is plain old fear. You make me brave enough to bring home a child regardless of their special need.ReplyDelete
Continued prayers for Rachel and your family. I imagine the next steps are going to be some of the biggest challenges your family has faced, but Rachel's story continues to remind me that no challenge is too big for our God.ReplyDelete
Here is a web site for an 11 year old girl who had her heart transplant 3 years ago,,,at Shands! You are all in my Prayers. With Love ~ JOReplyDelete
Daily prayers for you & Rachel & your family.ReplyDelete
Our daughter just received the Glenn last week, and is headed toward the FONTAN in the future. The surgeon shared some thoughts about the development of mechanical hearts in the future and the great progress being made in the medical world with them. I have no doubt, God can use anything...and we will be praying on Rachel's behalf that an answer is found to heal her broken heart. Hugs to you! ~Angie J.ReplyDelete
Praying for your sweet Rachel as you journey towards a new heart . Our daughter Teresa is also getting ready to be listed for a new heart . I sadly know exactly how you are feeling . We will keep all of your family in our prayers !ReplyDelete
If it helps, I thought of one thing from so many years ago. I tried very hard to be able to give some part of Rebekah Joy to someone. I begged our geneticist to find some part of her that could give life or joy or health to someone else. To hear that there was nothing of Rebekah's that was useful to another was almost as heartbreaking as knowing she was going to die. Yes, it is a horrible burden to deal with the life of your child because of the death of another but there is something powerfully comforting for that parent to realize that the death of her child would give life to another's.ReplyDelete
Thanks, Karen! I needed that!Delete