The chest tube did not help Ry at all. Despite the fact that she dumped nearly 15 ounces of fluid off her little lungs!!
We have in fact had a terrible couple of days. Ry has taken a real down turn and the doctors have done what they can to stop what seems like a terrible plummet. Today she was taken to the OR for a PD Cath to help drain her amdomen cavity and pull fluids off her completely over-loaded body. She is holding about 8 lbs of fluid! This is awful for someone who only weighs 22-23 lbs. Imagine gaining 33% of your body weigh in two days. She looks and feels miserable.
Ry is holding all of this fluid in her tissues despite the fact that she's dehydrated. Don't ask...
We pray today's procedure will be what she needs to get her more stable. She is unfortunately now put on a ventilater which means she is no longer breathing on her own. Ry has been intubated for numerous procedures in the past, but this time weaning her may not be possible or atleast not in the near future. We pray that she proves us wrong. We have been warned that she may be in this condition for a week or two at the minimum. Let's pray her lungs are strong enough to come back.
I will end this post with the news that she is stable and slowly draining. Please pray she continues in a positive course. I am too overwhelmed to write anymore at this time, but will update more tomorrow. We appreciate your prayers. Our little girl needs them now more than ever.
15 comments:
We are praying fervently and constantly and as another friend said God will provide. We will pray for continue positive progress.
Our love, Linda Carley and family
We are praying for you and Gilly right now - that your faith is stronger than it ever has been. Lay your worries and concerns on Him as He holds Ry in His arms. May God give you peace and hope that Ry will continue to fight and make a complete recovery. She is truly a miracle child. God continues to show us His power in each miracle that He performs on her. We love you guys and will continue to send our prayers by the minute for you.
May God wrap you, Gilly, and especially Ry in His arms, and give you all the strength you so desperately need right now. We love you all, and will continue to pray without ceasing. Love, JA, Kelly, and Hudson
Rylynn has been my mind constantly. I continue to pray that she remains strong through this setback. May God wrap His arms around you and Gilly and give you the comfort and strength to get through this. Ruling is such a beautiful girl who has and continues to touch many hearts. Praying for healing and that special angel heart.
Little girls are made of daisies and butterflies and soft kitty cat purrs
And all the precious memories of times that once were.
Little girls are made of angel's wings and giggles and a firefly's glow
And all the happy feelings, deep inside, that we all know.
Little girls are made of cinnamon and bubbles and fancy white pearls
And snowflakes and rainbows and ballerina twirls.
Little girls are made of sunshine and cupcakes and fresh morning dew,
And these are the reasons, little one, why everyone loves you.
Know that you are all so loved and that we are all praying and know that He is listening. loveDusty&Cindy
Praying that Rylynn will continue to improve and that God will give you and Gilly the strength and comfort that is needed now. God' s grace and healing touch will always be with you,Ry and Gilly. Try to rest when you can. Always praying for your precious family. NP. The angel
WILL come.
Just wanted to let you know that we are praying for your sweet little girl as well as for you and your family. We are parents to Emma, a fellow CMC heart baby (HLHS 11 months) and were your neighbors on the 8th floor not too long ago. My heart aches for you. We will continue to pray for you as you continue on this journey. Praying for peace, comfort, and healing.
Heart Hugs--
Sarah Stewart
(www.emmajanae.blogspot.com)
We're praying for you all!
God's little Angel's - From they time they are born children do have wings, even though we can not see them they are there. Rylynn's guardian angel is watching over her and her loved ones.
Praying for Rylynn everyday. We are a transplant family, too, (our 4 yr old son Carter is a multivisceral, 5 organ recipient) and dear friends of Keegan Harrison. We have been following you since seeing your story on Children's Med and finding your blog. (Note: My family is also from Waco.) We know you are in great hands at CMCD - we have been in ICU there many times ourselves. God bless, and we pray for Ry's recovery. Please let us know if we can do anything for you.
Andrea,
My words are simple in prayer but I know how God hears the spirit and infuses our words with His spirit and strength. There is so much spiritual support above for your little girl. She is struggling below, and we don't understand it, but God and many angels are near to Rylynn and to you and Gilly. You are all surrounded by love, support, and prayers. We love you so much, and He does, too.
Andrea, I am at a loss for words right now, my heart just aches for you. I can say nothing other than I am praying right now for God to wrap Rylynn, you & your husband in arms of comfort. I will continue this prayer, may you feel this comfort somehow.~Janette Garza
Andrea, there are no words to write, that could possibly take away your pain. You have asked for our prayers. As in the past, we shall continue our prayers for your precious little girl. We follow your Blog daily, as we pray for that special Angel heart for Ry. You were concerned that you and Gilly had made the right decisions. Your faith in God had been your guide. The choices you have made should never be questioned, God spoke and you listened.
Glenda Stehling (Trista Reid's mom)
Andrea, my mommy's heart breaks for you right now. What an exhausting roller coaster for you and Gilly! God has known from the beginning that you'd be in this situation; there are no surprises to the Almighty! I've prayed for you three and will continue to do so. God is faithful, and His Word says He holds all your tears in His hand. It also says He is our refuge and our strength. I pray this for you.
Love, Heather (Annie's sis)
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