She stayed in the hospital the first 8.5 months of her life. The majority of that was in the ICU, literally on her death bed. She actually had to be revived twice. The ventilator saved her life yet did terrible damage to her lungs at the same time. She has numerous diagnoses, but lung disease & bronchial/trachial malacia are the major issues that make her ventilator dependent. We were told that she would not survive if we took her home from the hospital, but we decided to take that chance and take a huge leap of faith. We were also told that if she did survive she would most likely not have any kind of quality of life due to such high oxygen requirements and her oxygen stats staying so low so much and because of all of the drugs that she had to be given. They said time would tell if she would ever even TRY to talk, crawl, walk or anything! We were told she would not be able to talk because she could not tolerate using a Passy Muir Valve (which hooks to her tracheotomy to help a tracheotomy patient speak), however she was determined to be heard and participate in conversations without the valve and now she talks our ears off. You can understand 85% of it perfectly, the other 15% is difficult to understand just because she has a tracheotomy and all of her sounds don’t come out correctly.
Physically we were told she might not walk. Although she has very poor muscle tone, She walks everywhere, with the assistance of her AFO’s that have twista cables on them to help her hip rotation!! Now grant it she limps and has external hip rotation and leg/foot pain that comes along with walking, but she is determined to keep up with all her siblings. She doesn’t realize she’s different. This is normal to her since it’s all she’s ever known. In the video she is at physical therapy at children’s hospital. Although she walks well, for her, they put her on the treadmill to try to build up her endurance. She doesn’t have much endurance at all and when she does get to go out she mostly is in her power wheelchair. She gets intensive physical therapy during about 8 months of the year. She cannot go to outpatient therapy from October thru January usually, because of germs and cold weather & generally those months are just much harder on her lungs. She stays most sick during that time and those are also the months she has frequent hospitalizations. She takes 20+ medicines a day and numerous nebulizer breathing treatments as well. She’s has had too many surgeries to count. She has been put to sleep well over 100 times. She has been transferred to Vanderbilt and Cincinnati Children’s Hospitals for second opinions because her doctors have never treated a child with her issues and as complex as hers. There truly is NO earthly reason she should even be here much less doing the things she is doing. She has had two major lung surgeries within a year and functions on very little lung capacity. She only has 20% of her right lung remaining and on the left lung she has only 50% of the top lobe and 70% of the bottom lobe remaining.
Often I have people ask me “How do you do what you do?” The human side of me gets down and out sometimes and I admit I have thought “Why my child?” As parents we want to fix everything and it hurts me to see my child suffer like she does, but then on good days and to see her in that video I am reminded how overly blessed I am. Even on the worst days she is still here with me!! That is my biggest blessing and so we do what we have to do and we do it by God’s grace!!
I remember vividly praying, in the ICU waiting room the first time she coded, “Please God, don’t let me lose another child” (we had a precious stillborn, Malachi, two years before I had Gracie) and then it was like a calm came over me and I truly realized for the first time ever, I think, that God loves her FAR more than I could ever fathom. Then I quickly shifted my prayer and I prayed “Please don’t let her suffer more than necessary just to keep her here with me. She is Yours, Lord. Please take her now, if that’s Your will.” By far, that was the hardest prayer I have ever prayed, but it took that day to truly make me realize I have only been “loaned” all of these precious kids I have!
Gracie truly is a modern-day miracle. She remains a very critically ill child and has a long road ahead of her, but by GOD’S awesome grace we continue to walk this road with her, the road that HE has already gone down before us!”
Most recently, in January, we were told that the time had come that we needed to be referred to Texas Childrens Hospital in Houston, to be placed on the donor list for a double lung tranplant. Currently we are in the process of getting financial consent for her to be treated out of state. When financial consent has been obtained, we will go to Houston for a 1 week period for testing, interviews, information, etc.. During this time we will also be looking for a place to live. Gracie and I will have to actually move to Houston and be residing there before they will place her name on the donor list-because we will be assigned a beeper and we have to be able to be at the hospital within 1-2 hours of receiving the word that lungs have become available. We have just begun down the road of fundraising and are trying to bring awareness to the events being planned. Gracie’s daddy, along with my mom, will stay behind with our other 4 children. We cannot begin to fathom the expenses of being financially responsible for 2 houses, double the bills, traveling expenses, etc..
More importantly we are tyring to raise awareness of Gracie’s health concerns, so that more people will be praying for our sweet miracle. We have a super long road ahead of us.
If you want to, please include her Caringbridge website. That way people who want to keep up with her progress or who want to know how to pray specifically, can keep up with her at www.caringbridge.org/visit/gracieannpoole<http://www.caringbridge.org/visit/gracieannpoole>. She also has a facebook page for support and info on fundraising efforts, it is “walking by faith with gracie”.
Thanks for considering sharing Gracie’s story. I love to hear how Gracie’s life blesses others. I often think, that is why she is the way she is, to show GOD’s amazing mercy and grace. It makes my heart smile to hear how many lives she has touched. GOD IS GOOD!