We received news that we have patiently been waiting on for 5 months now. It was not the news we were wanting to hear although we knew it was coming. We wanted to hear that it was something small and there was a quick longterm fix. We heard the opposite of that and our surgeon here thinks that Carter's bowels are not aligned correctly. He thinks that after birth things were not put together properly. He feels this is why Carter was only 14 lbs at a year of age and once he started being IV fed he shot up to 22 lbs. This happened because he was not having to rely on his intestines. They did do multiple biopsies of his intestines that should help them determine what is what. The surgery is going to be intense for Carter. They will need to cut through his bladder and abdominal wall to get to his intestines. They will then start from the begining, going through all of Carter's intestine piece by piece. They may need to remove some of his bowel and they are certain they will need to move things around. The surgery is expected to last 6-8 hours. It will take two pediatric surgeons and a Urologist. Carter will be placed in ICU for a few days and possibly kept on a ventilator for a few days to allow him to heal. He will then be transferred back to the floor we are on now and will start a long recovery process. Although we are ready for him to be well, it is going to be an extremely tough surgery for Carter and we are not looking forward to it. The surgery is scheduled for Monday morning.
The idea of closing Carter's bladder and fixing his pelvis has been thrown around, although it would only be performed if everything looked perfect. The Urologist here is 99% sure that is not going to happen. Brandon and I both have decided that right now is not the right time to close his bladder and have refused for this to happen. We both feel that it is too much on Carter at one time. The Urologist here and at Johns Hopkins have both agreed that we should wait. Brandon and I are still unsure if we will transfer all of Carter's urology and orthopedic needs to Cincinnati. We are trying to take everything into consideration before doing this. Johns Hopkins has a higher success rate of bladder closure than Cincinnati and we are known patients to them although it would be really nice to have all of Carter's care performed in one place. Cincinnati Children's in number one for G.I. issues. Cincinnati Children's and Johns Hopkins are two of the leading institutions for taking care of Cloacal Extrophy Children. We just have to make sure we chose the right place to take care of Carter. Please pray for peace and wisdom for both Brandon and myself. Pray for wisdom, knowledge, and understanding for everyone involved in this procedure here at Cincinnati Children's Hospital. Pray that we will make the right decisions for Carter's health. Please pray Carter tolerates the surgery well and this will fix his intestinal problems. Above all else know that God can if it is His will!
Praying for you! I'm passing this along on my blog.
ReplyDeleteYou are my prayers. My husband and I have a child (9 months) old born with a rare genetic disorder without a cure. It is devasting and the decisions are overwhelming... prayers from hayden... our blog Http://ourasldangel.blogspot.com.....Lauren Casavechia Greenville Ms
ReplyDeletemany prayers are with you and your family and on this journey you are continuing to travel
ReplyDeletePraying for you as this journey continues. Keep the faith, Meagan. Never lose hope and faith in Christ; hope to know that God will see you through. "Hope does NOT disappoint us, because God has poured out his love into our hearts by the Holy Spirit...." Romans 5:5 I hope that as you endure this next step that you will truly feel as if God is holding you in the palm of His hand. He is ever present, ever loving, always there.
ReplyDeletePraying for wisdom and peace. Praying specifically for Crater's strength and his ability to endure this next surgery. God bless you always.
Love from Mississippi!
Brandon and Meagan and Carter, I wanted to let you know that we are excited to see the miracle God is doing in Carter's body!! Our Father is the Ultimate Physician and we know that the surgeon's hands are a small piece of God's hands. God's hands guide the physician. Though the storm may seem long, the sun will come out when it's over. Though the sun may or may not stay out long before another storm blows by, know that it will eventually come out again...we rest in the peace of Father's embrace and I believe our Father is preparing each cell of Carter's body to heal according to His Will. The amazing thing about God too is that He is evident in your lives as parents. Being a parent myself and feeling depleted sometimes when my little man gets a sniffle, I'm reminded of the strength you two have as parents and it's the strength of our Father. Thanks for displaying that for me and for everyone. Carter is in God's care and His Will will be done for those who believe. Myself along with my congregational family at Congregation Beit Lechem will be in prayer for yall! Words to one of my favorite song, "Jesus has overcome, and the grave is overwhelmed! The victory is won. He has risen from the dead!I will rise when He calls my name. No more sorrow. No more pain. I will rise on eagle's wings. Before my God, I'll fall on my knees and rise!"
ReplyDeleteI am praying for you and Brandon to have that peace that passes all our understanding. God is in control and He has sent you to the right place at the right time! You know that God loves you more than we could ever imagine.
ReplyDeleteCarter is going to be just fine!
Sharon Shepherd
In our prayers today and forever.God will guide the hands of the Dr.'s tomorrow.May the peace of the Lord be with you,Brandon and that most wonderful baby Carter.
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