Tonight's one of those nights that I'm going to have to keep it short. Ry just fell asleep and there's no guarantee she'll sleep long so I have to take advantage.
Ry had a better day today than yesterday. She was awake most of the day, was able to hold down apple juice and even got out of bed for a bit. We were terribly sad to say good-bye to Gilly for a couple of days, but hopefully when he gets back she'll be feeling much better. We were also finally blessed with some good rain in Lampasas and he needed to get back and check on things.
So here's where we stand now. The biggest concern now is that her "right heart" still is not responding well and while it's not getting worse we have made little progress. I once again emphasize the fact that Ry is the first single ventricle patient who was placed on a VAD to ever be transplanted here at Children's. There are very few children most especially small children who have survived to transplantation. So while most patients' "right heart" bounces back by now, maybe Ry just needs more time or maybe its a sign of another complication. Unless drastic improvement is seen in the next 24 hours (and we're praying deeply that it is), we will have to take Ry to the Cath Lab on Wednesday. Gilly and I are very concerned and pray that this problem can be resolved somehow either prior to or in the Cath Lab.
Please life prayers for Ry tonight as you go to sleep. We've come so far and have asked for so many prayers already, but we need a few more. We appreciate you all and know that God has heard your voice, He has been good.
Sleep tight and I'll try to update again tomorrow.
18 comments:
I wanted to text you but am hoping you are already asleep in the last 10 minutes!! We are fervently praying for Rylynn, you, and Gilly....every night and especially tonight. You are one amazing mama to one incredible little girl. Don't ever forget He choose you and Gilly...and only the two of you...to be Ry's parents. Keep up the fight, Andrea. Big hugs...
hey
we hope that her right heart starts to cooperate. we're praying for her to make some progress. Re: you post transplant day 3...the picture of that contraption that has all her meds..HOLY COW!!! I was shocked with how big that thing was. It's also crazy that your little girl is paving the way for a VAD to transplant patient. That is amazing that she was the first ever at the hospital and now she can show doctors how strong she really is (which they already knew of course). I love loved her OU hairbow in the pictures. Too funny.
Andrea - We continue to hold you each in our prayers, constantly, every day. Your devotion and patient endurance are incredible. Thank you for your great blogs - they help us so much, and the information guides our prayers.
With love, Betsy Lehnert
You are all in our constant prayers. Many hugs :)
Belinda
Continued prayers!!! Xoxo
T &D
Baby steps, one day at a time. Day 4 and look how far she has come.! :) Praise the Lord that she was able to hold down the apple juice. And got out of bed too! Such a trooper! These are such good and positive signs of healing! Praying for that right heart to start cooperating already! Maybe all it needs is just a few more hours for those pressures to finally start lowering. We are praying continuously for her healing and complete recovery, patience and peace for you and Gilly as well as strength and courage for all three of you. God is so good and faithful. Nothing is impossible for Him. Stay positive and lean on the Lord. Lifting you up Andrea in prayer - I know your worries are great, but the Lord is greater.
Praying for restful sleep for yuou and Rylynn this evening. Sometimes, it makes all the difference. :) Sweet dreams for you both.
I know that the parents of St. Therese of Lisieux (Blessed Zelie and Louis Martin) have interceded on behalf of those whom I have prayed and asked their help. This morning I lift Rylynn up to them and ask that they intercede on her behalf with our Lord!
Andrea & Gilly - even though I really don't even begin to understand all that you posted (right heart, pressures etc), I know God does and he is not in the bueiness of limiting our prayers. So please know that we will be praying extra today for Ry and her pressures to get to where they need to be. You and Gilly have been incredible and Rylynn has been such a fighter. Hang in there!!!
We love you and continue to pray
Linda
You are all so strong and full of faith! I will continue in prayer for Rylynn, and for your peace and strength!
Holy Father,
You are the great physician; YOU are our creator; please assist the medical team and Rylynn to overcome the medical challenges and to triumph through it all; you are a God of miracles; promises; provision; and supreme mercy and grace…Rylynn has been in your precious hands this whole time; please work out all the details in your perfect way,
I ask this in your Holy Son’s name Jesus, THE Christ,
Amen
all the crazed children and faculty at st. george school in san antonio pray for you guys EVERY MORNING. we know that God hears our prayers, and yours, and that the marvelous things God has in store for ms rylynn are far better than we can ask for or imagine. prayers for you and gilly, especially today, for some rest and refreshment.
here's something i've been standing on the last couple of days, and maybe it's worth sharing..
exodus 14,
"10 As Pharaoh approached, the Israelites looked up, and there were the Egyptians, marching after them. They were terrified and cried out to the LORD. 11 They said to Moses, “Was it because there were no graves in Egypt that you brought us to the desert to die? What have you done to us by bringing us out of Egypt? 12 Didn’t we say to you in Egypt, ‘Leave us alone; let us serve the Egyptians’? It would have been better for us to serve the Egyptians than to die in the desert!”
13 Moses answered the people, “Do not be afraid. Stand firm and you will see the deliverance the LORD will bring you today. The Egyptians you see today you will never see again. 14 The LORD will fight for you; you need only to be still.” "
with lots of love and continues prayers,
rachel (friend of cindy ranne duncan's)
We are praying!!!
He heals the brokenhearted And binds up their wounds
Psalms 147:3
What awesome, encouraging posts! Y'all are so blessed to have so many praying for all of you. You can NEVER ask for too many prayers. God has blessed you with so much and a miracle heart, and he know his work isn't done yet. I really hope y'all can get the rest you so desperately need.
Long distance hugs,
Zach, Lucy and Bryce
Praying for Rylynn that her heart will start responding as it should.
I heard about Rylynn from Kaci and Renee Danek. Our mops group is praying for you guys!
Andrea & Gilly, we are praying every day every minute for sweet Miss Rylynn. God has answered the prayers for that Angel heart and we pray today and here forward that he hears everybody's prayer for a wonderful recovery. We love you guys, your strength has encouraged so many, and Ry's strength is so truly amazing.
Jerry, Renee & Callie
Praying, praying, praying and hoping you keep asking for prayers when you need them. I "know" you and Ry via a relative and I pray for your family ALL the time. I have so many friends and family members praying for Ry they now text, e-mail, and call me for updates. God put us together to be here for each other. So tell us what you need and please do not apologize. That is what God's people are here for...back to praying.
Andrea, I am in awe of the gift God has given sweet Ry, and I just know He's got a few more up His sleeve. I hope the healing happens quickly, and Ry eases into her old self as soon as she can. And thank you, so very much, for the posts - you make us feel like we're right there with you.
Sending love and prayers for strength and sleep, the McGhee crew
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