Today was a really bad day. Sats were bad all morning and never got to a stable place, just bouncing around a lot. Dr. A came up a little while after we got here to try and figure out what to do. We increased Levi's blood pressure medicine and pain medicine. They did another echo and head ultrasound today and the cardiologist is saying that the heart condition may be more than just the coarctation. He said the left side is much smaller than the right side (which we knew) but he thinks it would require a more invasive surgery than just the coarctation surgery. He said the same thing every doctor we see says: there are a lot of things stacked up against Levi and is this just too much for him to survive. I am trying not to get discouraged but we are at a really bad place. He is just not doing good. I was prepared for things when he was doing so bad on ECMO and we knew there wasn't much time left, but then God turned it around out of nowhere. I am not prepared for things to be this bad now. I want it all better. We are supposed to be doing good now and ready for surgery. I don't know what too much is for Levi but I am praying that God will help him tonight and we don't have to get to that "too much" point. Right now, I know we are not far from it and something has to change. I can't sit by and watch my child be miserable so I am just hoping and praying that God will turn things around for the better again. Surely He wouldn't get us off ECMO and get us this far just for everything to be over. Please just pray for Levi. Please pray for us all. We need God to guide us and tell us what to do. We need God to comfort Levi and make him so strong and we need Him to heal Levi. We need Levi at a stable place. Please, pray harder than ever right now and more than ever. We really want to bring our little boy home, but I think even more we want to see everyone say "Wow!" when Levi gets better. I want them to have to give God the credit and say that Levi is a miracle baby from God.
Subscribe to:
Post Comments (Atom)
Hi! I found your site recently and have been "lurking" behind the scenes. I just wanted to let you know that I WILL be praying for your family today. I ask God to give little Levi a special touch. I know He can.
ReplyDeleteTrusting God With you,
Erin
This comment has been removed by the author.
ReplyDeleteLord please have your hands on baby Levi, we know you can and do perform miracles every day and we know you can heal him and bring him through this! In Jesus Name I pray because in him all things are possible, Amen!
ReplyDeletePraying for Levi!!!! Praying for a stabile day, for a good day!!!!!!!!
ReplyDeleteHugs,
Jennifer
Mom to Dakota 12-25-2008
RCDH survivor
I hate to hear this but still have such strong faith that Levi is going to have a testimony larger than life itself! Praying for comfort for Levi and you as well, for wisdom for the doctors and for healing and stability all over his little body. Praying fervently!
ReplyDeleteYour story has touched me so deeply. My son, Levi is an ECMO survivor. He was born with pulmonary hypertension, bilateral vocal cord paralysis, and chronic lung disease. We prepared for the worst. We even baptized him in the NICU. We brought Levi home when he was 2 months and 3 days old. Levi is 7 months old today. He now has a trach and is on 2 liters of oxygen. Your son and family will be in our prayers. My thoughts are with you.
ReplyDeletePraying for Levi and your whole family.
ReplyDeleteSaying a special prayer for strength in your mama heart, Becca. Holding you and your family close in my heart.
ReplyDeleteCorinne, mama to Samuel
Praying!! Praying Levi will be given the strength he needs to have a better night and turn things around.
ReplyDeletePraying!! Praying!!! Praying!!! For your precious baby boy!!
ReplyDeleteContinuing to pray for Levi!!
ReplyDeleteYou should know that people already think Levi is a miracle from God. We do look at him, as well as you and Micheal, and say WOW! I am amazed at your strength and perseverance. Levi has brought so many people together, closer to God, and maybe some to God for the first time. We are praying so hard for you, Micheal and Levi. Love, Troy, Jen, and Tucker
ReplyDeleteSo much love and prayers for your family right now... May God surround you with his love and comfort right now... You need to know that you are an amazing mommy and fought with all your might. Levi loves you so much and is so thankful for your love. He feels it. And knows it in his heart. Blessings...
ReplyDeleteI know it's been a while since your last update, I just wanted to let you know that not a waking hour has gone by since I heard about Levi, that I havn't prayed for him.
ReplyDeleteTHOUGHTS AND PRAYERS GO OUT TO THE WILLIAMS FAMILY DURING THIS DIFFICULT TIME. PLEASE KNOW THAT WE ARE ALL LIFTING YOU GUYS UP IN OUR PRAYERS, AND YOUR GUARDIAN ANGEL WILL ALWAYS BE WATCHING!! GOD BLESS!!!
ReplyDelete