Ben is home and doing well. Everything ran smoothly at Children's today... surgery was on time and we had a great team working with us this visit. The IV was placed with only one stick (a first for us) and the blood work was all drawn from only one additional stick. His recovery nurse was wonderful and got us out of there really fast. Now Ben is in the comfort of his own home watching Handy Manny eating Pedialite via his Gtube.
That's the good news - the not so good news is the outcome of the scope. The irritation of his airway seems to be down, but the swelling and size of everything in his airway isn't. What this means without going into too many details (I'm too emotional drained to talk about the nitty- gritty) is that Ben won't even be considered for airway repair for at least another 10 years. And if/when the airway reconstruction does happen, it will be more involved than expected. In addition to using cartilage from his ribs to rebuild his airway, he will probably need skin grafting as well. Just a lot to wrap our minds around right now. Needless to say, our spirits are down. We just have to remind ourselves that Ben is happy and the trach is just a small price to pay for having him in our lives.
6 comments:
So sorry to hear the scope didn't have better news for you guys.... :( I'm sure that is not the news you were wanting, but it sounds like a possibility someday. Ben is a happy little guy though and we are all so happy to have him in our lives...what a joy he brings to all of us. :) Looking forward to seeing you all this weekend.
eeeehhhh...that's my sound of frustration joining right along with you! how very very very frustrating! i don't know what to say except that i am thinking about you and sending you love and smiles. hoping ben keeps you smiling with his new signs. :)
Amy I am so sorry for your news and I will keep Ben in my prayers. Its always hard to go in hoping for good news and get nothing.
I will have to wait til July to give you a big hug but I will give you one and Eva will too.
Hugs,
Crystal and Eva
I know you're hurting and that the ache in your heart will lessen with time as it has before. Stay strong, be diligent and don't give up hope. I love you. Mom
Amy,I was so sorry to read that Ben's test didn't go as you had hoped. You guys are in our thoughts always. Ben will keep you happy with his progress with his sign language. Keep your chin up.
Suzy
Oh, Amy. I am so sorry for the news that you received... so sorry.
Your mom's comment made me teary...
You're right - - the trach is a small price to pay to have him in your lives. But the news is heartbreaking nonetheless. It's ironic that I am catching up on your blog all in one shot... reading about his amazing accomplishments in school and then reading this a moment later - - the good news is that the trach is giving him the ability to breathe and not struggle through that airway... he can focus and learn and be the beautiful, sweet boy you love.
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