I can't even think of a title for this post.
My heart is broken, and I don't even know where to start.
We got the worst news possible today after Carter's scope of his airway.
They found that he has severe Tracheomalacia. Basically the cartilidge that holds his airway open has collapsed by 90%. It's along his entire airway, and is so bad that they aren't even sure that a tracheostomy would help him. The doctor thinks that it's been progressing for awhile, and this last intubation just sent the little guy over the edge.
We are stunned.
The doctors can't believe that he's been breathing on his own so well for this long, and it sounds as though they aren't sure that he'll ever be able to breathe on his own without a ventilator.
They are doing a chest CT on him tomorrow to be sure that no major blood vessels are causing the malacia, but the chances of that being the problem are pretty slim and even if that is the problem, it would mean a pretty major surgery that we aren't sure would work. We just don't know how much more we can put Carter through.
We have some major decisions to make over the next few days...decisions that I thought were at least years down the road. We know that God has a plan...he always has for Carter even if we wish it were different.
51 comments:
We are praying for Carter and your family. He is a trooper. God bless.
I'm praying for you all. I'm so sorry, I really had no idea.
Oh Heather...(peppi here)... I've been praying all day...been worried all day...and will NOT stop praying for the miracle that I know can come. I love you.
I am praying! My daughter also has Tracheomalacia along with many other medical conditions and Cystic Fibrosis.
I am here if you need to talk :)
Oh, Heather! My heart is breaking for you. I can't imagine what you must be going through. Carter is such a special little spirit. Remember, God won't give us any challenges we can't handle. We're thinking of you and praying for you! Good luck, "keep on keepin' on", STAY STRONG LITTLE C!
Keeping you all in our prayers
Heather,
We love you and we love Carter. I continue to pray.
huge prayers for carter and for your family.
praying. crying. hoping. love you. your family is precious. praying for peace. and comfort. that you would feel the love that surrounds you. xoxo.
My heart just dropped to the floor. I will be praying for you guys.
As a mother watching your kiddo suffer and having to make life changing decisions, my heart goes out to you. Praying you will have your motherly instinct to know what is best for your precious little guy.
We are praying very hard here...{{{{{hugs}}}}
Heather, I am praying like I have never prayed before. Huge hugs!
Praying for Carter. Praying for you, and your family. Prayers for wisdom, and peace.
I've seen you say many times that God has a plan for Carter. Many, many prayers for you as you watch that plan unfold.
Prayers being said. Prayers for peace, prayers for comfort, prayers for guidance, prayers for wisdom, prayers for miracles, prayers for hope.
Huge hugs Heather! We love you! We love Carter!
Heather, my heart goes out to your family! We will be praying for you! Love you girl!
I am sitting here just praying! We love you guys. I am praying for peace and wisdom for you. May you see God's plan as clearly as He does.
I'm so sorry. I wish I could do more than sit here and cry for you. I'm praying for you and your sweet family!
My heart just sank. I can't even imagine. All we can do is pray for you guys. Know that so many are pulling for your sweet Carter. We'll pray that your mind will be clear and open to the answers from our Heavenly Father about what you should do. Hang in there...
I am loving all of the love and support. Know that we are holding you in prayer as well!
I don't even know what to say. I am so sorry that you received such devastating news. I am still praying for the doctors to know the right way to help him get through this. My heart physically jumped so I can't imagine how yours is feeling.
Oh Heather I am so sorry I will continue to Pray fervently for family
My heart within seconds of seeing this post. Your family is in my prayers. God will help you make the right decision.
Many prayers for Carter & Family. <3
Heather, I'm so very sorry to hear this news. You and precious little Carter are in my prayers. xoxo
Many prayers and hugs!
I'm so sorry. You are all in my thoughts and prayers.
I don't know you, but I am praying for your family.
I'm sorry he has Tracheomalacia. Ava has that as well. I'd call or email Dr Robin Cotton at Cincinnati Childrens. He's the best airway Dr in the world. He's famous for fixing the worst airways. I would talk with him before making any big decisions. ((Hugs))
Heather, I don't even have words right now...I'm so sorry. I am praying and know that God is holding all of you in His hands.
Oh my goodness, I'm in tears. I am so sorry you are facing this. You are in my prayers. Praying God's hands upon Carter and your family.
Oh my gosh, I'm so sorry! Why do they think he'll need a vent though! Have you talked to Dr. Pfeffer? Just email me so we can talk!
Praying for your sweet baby boy Carter.
Praying for Carter and your family today, Heather. We have experience with laryngotracheomalacia and all the difficulties that go along with it. If anyone can overcome the challenge, it's Carter. My money is on him. Continued prayers, we love you.
Oh my goodness .... I read this post and then realized that I was holding my breath the entire time! By the end I had tears running down my cheeks.
I am so sorry that you are having to make these tough decisions. I hope that the doctors can come up with a good solution and quickly!
Carter is getting prayers from so many places, and he will be in my thoughts all day!
So, So hard . . .praying!!! My grandson, Owen also needs all the prayers he can get right now too - he's waiting for a new liver.
www.thesiriannifamily.blogspot.com
Lots of prayers for Carter, you and your family as you make these tough decisions. Hugs
Your children are beautiful. Your family is amazing. We love you and are here for you. God is with you. Hugs and prayers April.
I am praying for Carter and your family!
Heather, my heart is aching to just reach through this computer to give you and Carter the biggest hugs...
...I am so sorry to hear this news and am praying for you and your family...
If you need ANYTHING, please do not hesitate to ask.
Thinking of you, your family and Carter. Been out of town in no service areas, and just got the chance to catch up on all that is happening. You are all in my thoughts and prayers!
Our prayers are with you! I hope things get figured out for him soon!! What a fighter this little guy is!!
Oh gosh. =(
I'm so sorry. Lots of love to Carter and you and all of your family.
Praying for Carter...
Oh wow, I'm so sorry to hear this. I'm thinking of little Carter and your entire family.
We will be praying for a miracle.... even though Carter himself is a complete little miracle. Lots of love! Carrie Kerr and Family
I'm so so sorry! Poor little man and poor Momma! I'll have you in my thoughts and prayers! May God give you peace, grace and knowledge as you make some big decisions! Love, Hugs and Prayers!!!
Lots and lots of love and prayers, Heather.
Your family is in my thoughts. I will be hoping for the best.
You are ALL in our prayers! Let us know if we can help. Lots of Love.
Oh no - my heart just sank too. Many prayers for your sweet Carter and for the decisions you are being asked to make. You will know what is right for your little guy. We in the meantime will pray for a miracle. Hugs from us!
My son was born with HLHS on an Jan 1st (after his 5th open heart surgery), he had a cardiac arrest for 30 minutes and had to go on ECMO. He has a very profound brain injury and also has tracheomalacia and bronchomalacia. He has a trach and is vented. He finally came home after 18 weeks in the hospital this last time and is doing better. Having a vented kiddo at home is TOTALLY possible and honestly, not that difficult. You get used to it. Praying for you!
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