***JoJoGee***

CaptainSerious

How did Lily's scope go today?  I was thinking about you.  I hope you got the results you were hoping for.

JoJoGee

Thanks for asking!  Unfortunately, we didn't get the answer we were hoping for - Lily is not a candidate for reconstructive surgery at this time.  Basically, while Lily has met all of the requirements placed before her after her last scope (She's remained healthy, her lungs have improved significantly, and she has grown), she needs to meet more developmental milestones to be a candidate for reconstructive surgery.

 In short, Lily has a really floppy airway - in fact, it has practically collapsed where her trach enters it.  So, in order for Lily to be a candidate for reconstructive surgery, she needs to strengthen her neck muscles - which will, in-turn, strengthen her airway.  And, the only way she will strengthen her neck muscles is if she learns how to sit independently, crawl, walk, etc..

After taking some time to process it all, DH and I understand where the doctors are coming from.  If we are patient, and we wait until the doctors believe Lily is ready, then Lily's chances of living trach free are around 95%.  However, if we rush it, then the reconstructive surgery might fail.  In which case, we'll need to do another reconstructive surgery.  And, with each subsequent surgery, Lily's chances of living life a trach free life decreases.  So, we certainly don't want to rush things...But, that doesn't mean we're not bummed out. 

I think the hardest part to us is that we can't control when, or even if, Lily will meet her developmental milestones.  I mean, we could keep Lily home to prevent her from getting sick, and we could increase her caloric intake to help her grow, but beyond the OT and PT we are already doing, we really can't do much more to help her reach her milestones... we knew Lily's CP might prevent her from walking or even talking, but I never knew it might prevent her from living trach free. 

DixieNormous330

It's a very different situation from Lily's, but we have very close friends who have a son with Golden-Har syndrome. He's missing half of his facial bones and jaw. As a result he's trached. He will be trached until he is old enough/big enough to have ribs taken to reconstruct the facial bones he's missing. He's 3 now and VERY tiny. He has a long way before he can be trach-free.

 

What milestones do they want her to reach? Are they taking into account her CP and what her limitations may or may not be?

JoJoGee

They say that she needs to hold her head up better.  I wouldn't say she has poor head control, but it is hard for her to lift her head up if she is on her tummy or on all fours.  So, I think we need to get to sitting independently, and four point crawling.  The crawling is going to be the hardest part.  Her arms are so week.

They know she has CP, but I think from there point of view, that only exasherbates the problem.  It just means she is weaker than most children her age and therefore, it will be harder for her to decan successfully.

CaptainSerious

I'm so sorry to hear that you'll have to wait.  It must be so frustrating not knowing when or if she'll be able to have the surgery.  I will be praying that the therapies work better than expected and that she develops the muscles and control she needs very soon!