ENT Update

So, they took her back at 8:39am.  We got here at 6:45am.  First thing this morning, we had a flat tire!  Of all the luck!  There is a big screw in the right front tire.  Let me just say that we did NOT need the added stress.  So, we limped to the hospital and Tom will take care of it when the spinal fusion is underway (since that will take several hours).

She got mad when she saw the hospital bracelet.  At first she held out her hand, but then changed her mind.  We ended up having to put it on her ankle - and that was a struggle.  Then they called us back and she saw the bed and hospital gown.  Oh no.  We're in a bad time period.  Old enough (and experienced enough) to know what's going on, but not old enough to understand why and be able to prepare on her own.

She broke my heart turning away from us in her stroller and shooing us away.  She wanted no love from us this morning.  Then they brought her Versed.  That definitely helped her relax.  But even still when I asked her if she wanted to sit on my lap, she shook her head "no."  Like a knife through my heart I tell you!!

It is now 9:55am and we have spoken with her ENT.  Her ear looked good, except for the large amount of ear wax gooped in her canal.  Wearing a hearing aid 12 hours a day makes things worse in that department.  So, he started us on an ear drop regimen.  Hopefully that will help.  He said her ear drum looked good and there was no sign of infection.  So he did not place another ear tube.  Which is good, I guess.  Her other one had fallen out and without any infections in recent memory (years) there was no reason to replace it.

As far as her jaw goes... he still could not use a rigid bronch.  He said that's not necessarily a reason to keep the trach.  The problem will be if she doesn't have the trach, they will not be able to intubate her for surgeries.  That's disappointing.  Not sure what would/will happen then.  He used a flexible bronch that is fed in through the nose.  He said you can use that for surgeries, but it is tricky.  Not really a concern right now, obviously.

He said that her tongue base and jaw still occluded a little bit during the bronch (when they didn't lift her jaw up out of her airway).  So, that's unfortunate.  But he said that a bronch is so subjective for her situation.  The only way to see if she can be decannulated is to have a sleep study.  She would be inpatient here, and while she's sleeping they would cap her trach and see what happens.  She does fine while awake, but sleeping could be another matter.  :(  So, we will plan to do that sometime this summer.  He said that her trachea itself looks great and healthy so if we can just keep her jaw out of the way, we'd be home free.

I am certainly disappointed overall.  I really thought that he would be able to see a positive difference from the last bronch.  But he said that it was only slightly better than the previous one.  Her jaw was just so severe at birth.  Ugh.

He said that since she doesn't have any chronic lung issues (infections, etc.) that he would decannulate her whenever she was ready - no matter the season.  So, that's good.  So, I guess we'll just get that scheduled at some point and go from there.

Moving on...

Earlier when waiting to be taken back to the OR, her ortho surgeon came to talk to us.  She said she might consider fixing the area higher up on her spine (kyphosis scoliosis) - the part that bulges out.  But, she needs to see how long she's in there and after fixing the bottom part, she needs to get x-rays to see how it affects the bulging (kyphosis) part.  They said they would call us to let us know what she decides because if she continues on, it will add another hour to her surgery time.

The negative to fusing the upper part today is that it will no longer have any growth potential.  So, that would mean that two areas of her spine would be fused and not grow.  But, she said she can't be certain that it would have grown normally anyway.  The areas are abnormal in nature from the get-go - who's to say it has any "normal" growth possible?  And any growth she does have will just keep it going more crooked.

In situations like this - I just try to not think about it and put it in their hands to make the best decision for her.  Not that I had a choice, really.  It's a good thing I was never a controlling person before Harlie came along.

So now we wait.

I wanted to show you pictures of the Ronald McDonald House and of Harlie in her hospital gown.  But, we forgot our USB cord to upload the photos from the camera!  Ugh.  So, we'll have to see what we can do about that.  I can't live all week without showing you pictures!

Oh, and during our wait to go back to the OR, we met with both anesthesiologists.  The ortho doc was pretty funny.  He said we had no idea how much planning and time has gone into preparing for this surgery.  He said he knows her history intimately and the amount of e-mails were crazy.  I told him now he knows what our daily life is like!!!  Try throwing two boys into the mix and BAM! you go crazy.  And then you want a Pug puppy.

It's now 10:36 and I just heard from Tom that the tire is plugged and it only cost $17.  We were nervous that we were doing some damage to the tire driving on it to get here.  So, hopefully that will last us a while.

Okay, I will update you more later.  Thank you for all your comments, messages, texts, etc. of support and encouragement.  I can't tell you how much your outpouring of love for us makes us feel during hard times like these.  While my heart breaks in some places, it swells full in others.  Thank you for that!

xo,
~Christy