Bronch

HI!

Well, Alexander had his broch last night. He stayed Â*in the picu overnight, he has a hard time with sedation, but did really well this time. They didn't even Â*have to bag him this Â*time. The news wasn't great. His lower airway is still floppy and his upper airway is still crowded, and now he has a large granuloma above the Â*trach Â*site. UGH!!! Â*Very disappointing!! Â*I know you all can relate. I've had day dreams that I would go to see him after the bronch and the trach would be gone Â* Â* Before the bronch the dr was optimistic and said if everything looks favorable i'll just leave the trach out now. Well, that's all I needed to hear to get my hopes up.Which I had been trying very hard not to do. Well, it is what it is! Â*He'll be re-evaluated in a year Â*to check for airway growth. I guess it's better to have the trach and be safe than to take a chance having it removed.(can you Â*tell i'm just trying to make myself feel better). Is it going to be hard for him to use Â*his passy valve with the granuloma above the trach Â*site? Â*Anyway, thanks for your support and prayers, and for listening.

Erinne

[twintotwin]

Erinne- I was hoping to hear better news for your Alexander too. I am sending you a really big hug. I certainly can relate. I wish your doctor didn't give you that 'leave the trach out' business. That would bring my hopes up super high and the disappointment would be even more intense.

I don't know how many of you do this, but it helps me from time to time...I just remember how desperate I felt when my boys were close to dying, how I would do anything to keep them alive... my wish came true and those trachs were placed there for a reason. It helps me accept it for a little longer.

Hugs,

Kerry

[Zoe's Mom]

I am so sorry things didn't go well-big hugs to you. I think it is almost impossible to not get your hopes up-it always annoys me when people tell you not to get your hopes up. I also give myself a little time to feel sad and sorry for us, but in the big picture, the trach is the reason why I have such a sweet girl, and you have such a sweet boy at home. It helps me to take the "better safe than sorry" route sometimes.
Hang in there.
Hugs,
Lora

Thank Â*you soooo Â*much for the words of encouragement! All of you give me the strength to get through this. Â*It helps Â*me to know that some of you are Â*farther along in this journey and are doing great. I just need to keep remembering that the trach saved his life. I think I will let myself feel crummy for a little while. Thanks again!!!!!


Erinne