Some people have been with us since the beginning of her sickness and those that could not be with us physically have been on their knees in prayer and Rhonda and I want to thank you. Since April 15th Madelyn has gone through the valley. She has had her heart to stop twice, that we know of, her heart to enlarge so much that it would not pump enough blood around her body. Her right leg to clot and because of lack of blood circulation almost lost it. Her chest was opened up three times. She lost enough blood to fill her body twice in 4hrs. She had a heart catherization through her groin…during the same procedure had a biopsy done on her heart. Her left lung collapsed, was put on ECMO for 11 days. While on ECMO she had 3 cat scans and determined she had a brain injury. She has had a feeding tube put in….had part of her stomach wrapped around her esophagus so she would not reflux. Had a trach put in. Her left vocal cord was paralyzed. Had a camera put down her throat to determine she had huge blood clots in her lung that was collapsed. Was given surfactant twice to get her lung going. Had a tube inserted in her lung to drain the blood. Had seizures due to the trauma, stormed for 3 months. Was put in 3 different hospitals. Had her chest x-rayed around 20 times….her heart was echoed numerous times. Her hip is dislocated. We were told she was blind….had no hearing. At one time she was hooked up to 33 IV lines going into her little body to keep her alive. We were told to let her go….she would not get better…this is all we could expect of her for the rest of her life. And she was on a ventilator machine for weeks. All of this happened in a period of 3 months. She came home on July 13th. The reason I went through this is to demonstrate the power of God and prayer of His people. Her heart is no longer a factor. The last report we got was that it is healthy. Her right leg is fine….the recent doctor visit was described as her having powerful lungs….she can see…hear…her vocal cords are not paralyzed. Her brain injury is getting better with time as she comes off of medicines. Rhonda and I was faced several times with a doctor coming to us and telling us she was not going to make it through the night. Back then we did not know sometimes how close we came to losing her time and again. One example I can share with you is her cat scans…she had 3 of them. We thought at the time that it was to re-evaluate her brain injury, but in fact her brain was swelling and if it continued to swell they were going to pull her off of ECMO. But on the last cat scan it showed that the swelling was going down. That’s the power of prayer. I will not lie to you their were a lot of nights Rhonda and I cried ourselves to sleep. But Gods grace is sufficient. I cannot stand here today and say that I am thankful or understand why God allowed this to happen, but I can say I am thankful for his comfort and grace and peace that he sent to get us through it. Madelyn’s life has touched so many lives that we will not know on this side of eternity the affect she had. There have been people who told us that they had peace the whole time and that she would recover from this and be fine. To be honest with you Rhonda and I did not have that peace at first. Rhonda told me just recently that when Madelyn got sick…she would stay at her bedside and whisper in her ear and say “Don’t leave me, mommy needs you, keep fighting”. But Rhonda had no peace. Not until one day when Madelyn was at her worst and a doctor came in and told us that she was not going to make it that Rhonda said she prayed to God and said “Lord I don’t know what your plans are for my baby girl but I accept your will for her life….I am willing to give her back to you.” She then leaned over to Madelyn and whispered in her ear the most hardest thing a parent has to say to their child and said…”Madelyn its all right if you are tired of fighting for mommy, I understand so if you want you can stop fighting, mommy would be very sad but one day I will see you again. At that point Rhonda said a great peace swept over her and she knew that everything was going to be all right. Rhonda and I still do not know what the Lord has in store for baby girl, we could lose Madelyn tomorrow but we have accepted that whatever happens to her is the Lords will. I know that some of you here can’t understand that. Some have asked, “How can you say that you know that Madelyn will get better?” Because we have faith in the Lord that regardless if it is here on earth or in heaven one day Madelyn will have a complete healing.
Madelyn is now 9 years old and a great joy to our family. She has started taking steps in a walker and saying a few words. She takes just taste of food by mouth and is still feed through her G-tube but is growing stronger everyday . God is truly blessing.
We are doing this fundraiser to raise money for a wheelchair swing set for Madelyn. She loves to swing but does not have anything or place nearby to be able to swing. God is doing great things through Madelyn and we are blessed to still have her .
Please consider helping us Make A Way For Madelyn!
You can read her journal from the start
till now at www.caringbridge.org/visit/madelyngurganus
Thank you and May God bless you for your help.
The Gurganus Family,
Shane and Madelyn
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