The meeting was held today and the docs pretty much said that Caleb's heart may be in the early stage of heart failure. Therefore, they believe the next step needs to be open heart surgery to fix his ASD (his hole) and his tri-atriatum (the membrane that is causing a division in is his heart that is making the heart look like it has three atriums). They believe this has to be done to prevent any more damage to the lungs, help him in the lung run for the Thymus transplant, and to help him recover quicker from any possible future infections.
Of course with any open heart their are concerns:
- He will be on bypass and that does cause extra fluid in the lungs after transplant. This is a concern because Caleb already has some lung issues going on. He will probably not be the typical post op patient due to the lung issue. They said he could possibly go back on the oscillator again due to the fluid.
- Caleb has fungus in his lungs. So they want him to complete his full course of antifungal meds before going to the OR. The concern with this is they use a piece of foreign material to close the hole. If fungus attaches to the material it would be a very serious situation and life threatening.
- Caleb has other things that are going on right now that are not optimal for surgery: nutrition, elevated liver enzymes, etc. So we are trying to optimize these situations for the surgery also.
They did say today if the course of antifungal meds were done today they would have him in the OR as soon as they could. They are hoping that he can go to the OR within the next 2-3 weeks. I am leaving some things out but the main thing they stated today is that we are not starting out in 'optimal' conditions so we are not sure what his recovery will be like for the open heart.
So as always we would appreciate everyone's continual prayers for our Little Bubber.
God Bless Caleb!!
11 comments:
Dear Sarah,
It's hard to find the right words to say, but I want you to know you have our sincerest thoughts and prayers with you at all times. I try to write every night just so you know how much we are praying for Caleb, you and Brian. Caleb is never out of our thoughts. I wish there was something we could do to make this easier for you. Please just say so if there is...until then, we will just keep praying.
At the end of every post, you always say God Bless Caleb, but I say GOD BLESS YOU AND YOUR FAMILY!!!!--you all are very special!!!
Love, Becky and Bobby D.
Continued prayers, much love and support are coming to Caleb, you, Brian and your families. So many people are aware of Caleb's problems and continue to pray and be concerned for all of you as well.
Love-
Chris
Well Sarah, we will be storming heaven with prayers the next few weeks. I mean we'll be getting EVERYONE we can to pray for your little Bubber.
He is so precious and such a fighter, we are all going to be behind him and the two of you, every step of the way lifting you all up in prayer.
You are doing an amazing job of staying strong and keeping all of us Caleb fans informed so we know what to pray for. Please take extra good care of yourself so you can keep being so strong for your little guy. Your little guy we all love so much and are rooting for constantly.
Love you all,
Corrie
As always you are in my thoughts and prayers. God bless sweet little Caleb.
Hugs,
Crystal and Eva
Dear Sarah & Brian,
You do not know me, but I really want you to know that you both and especially your precious little Caleb are in my prayers each and every day. I am Tate Young's and Peyton Young's Grandmother and after reading about your little Caleb (I can't get through all your journal for my tears) I know a little of what you both are so bravely enduring. Our God is so good, He has a plan for us all and I will lift you up to Him each day. I have SO MUCH admiration for the way parents such as both of you and Corrie and Mike are taking care of the children God has entrusted to you! It is parents like you who are an inspiration to everyone. God bless your little one and you too.
Sincerely, Carolyn Young
Sarah, Brian and Caleb,
Just checking in and it sounds like you're not getting really good news..... I'm so sorry to hear about my pookies' heart. Be strong, cry a little and keep the faith. I'll keep you on my prayers and I'll be back soon.
Peace, Denise
Dear Sarah and Brian,
We are keeping you, your familes, the doctors, and especially Caleb lifted up in prayer. Caleb is such an AMAZING little boy. We'll continue to be here for you in any way we can. God bless!!!
Love,
Hannah, Shane & Ben
I am praying for Caleb as well as for you, his parents. My heart breaks as I think of the turmoil you are all going through. Take it one day a t a time and know that your precious Caleb is a strong boy! God Bless all of you.
Love Jennifer Mock
sarah,
its been a very long time, it feels like an eternity since i last saw you but i stumbled upon your blog after seeing it on heathers myspace page and i want to tell you that my family is thinking about you and praying for you and your family often. i cant imagine the place you must be in right now and i think you are the most amazing mommy and caleb is quite possibly the bravest little guy ever. he is such a hansome boy, im sure you are very proud. stay strong and please do not hesitate to let me know if there is anything i can do, just call 760 994 7274. you are in our thoughts....
christie williams(foppiano) lela, charlie, piper and brian
You guys have incredible strength. I have been reading all of the updates and my (our) hearts all go out to you. You all are in EVERYONE's thoughts and prayers here int Wheeling. Your little guy is quiet the champ! Take care of yourselves and please know you have everyone's prayers and support!
God Bless you all!
Jodi (Haney) Walters
I remember the early days so well, making all those big medical/surgical decisions. I wish you much strength. Things do get easier! Wishing you much love & strength (& sleep!)
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