Thursday, August 1, 2013

ENT appointment

Today we went to see Harlie's local ENT.

But I was determined to get in a run today.  So, I squeezed in a three mile run - in the rain - before we left.  For those of you who know me well, you know how much I loathe running in the rain.  Just goes to show how much I needed to run.  I was super short on time so I had to rush to shower and change and I had to drink my breakfast.  But, it was worth it.  My mom came over to watch the boys for me.  I knew this would not be a good appointment, so I really didn't want the boys there.

We pulled into the parking lot and as I was getting my stuff together, there was a knock at my window.  I about jumped out of my seat!  I turned to look and it was my friend Kat!  She saw us on the road and followed us there just so she could give me a hug!  I love my friends and how good they are to me! What a great way to change my mood!  Thank you Kat!

Coincidentally, when we got home from the appointment and I checked our mail there was a card in it for Harlie from Kat and her kids.  She sent it to the hospital, but it didn't make it to Harlie while she was inpatient.  Kat was smart enough to put MY address as the return address, that way it was still sent to me.  I'm impressed Kat!  I would never have thought of that.  The card is a picture of a sweet Pug (although that's probably redundant, huh?) with a hospital gown and a thermometer sticking out of his mouth.  Too cute!  Thanks Kat!

Anyway, after we said good-bye, we headed up to see the ENT.  I told Harlie every time she pointed to her mouth that we were going to see the doctor and maybe she would be able to help.  I tried to prepare her for sitting still and letting the doc into her mouth.  Whatever that's worth.

The appointment went as I expected.  It was a brawl.  That little girl can wear out three adults.  I sat in the chair and put Harlie in my lap so I could bear hug her with one arm and hold her forehead with my other arm.  Terri held down her legs and the PA held onto her hands or arms, whichever slipped from my grasp.  And the doctor tried to do what she needed to do in the middle of all that fighting.  I really believe it was painful for us all.

Her doc had to use metal tweezers (no sharp points) to get in there and pull out a sample.  It is really stuck in there!  She pulled one sample from the back/roof of her mouth and had to work really hard to get a chunk off the back of her tongue.  None of us could hold that down!

She sent the two samples off to culture.  She said she should have a preliminary report sometime tomorrow and will call me.  She said that as we swallow, we get rid of dead cells.  She thinks that those cells aren't able to go anywhere, so they are collecting, drying out and attracting bacteria.  She's gagging all the time because this stuff is sticking to the back of her tongue.  Ugh!  How awful.

She gave me the names of some oral gels and moisturizers to try to coat the inside of her mouth to keep it from drying out.  As soon as we got home, we tried them.  Applying this gel stuff (or spray) is not as easy as you might think.  Apparently this gunk has made her mouth sore - because she is SUPER sensitive to touch.  Coating the inside of her mouth with the gel - and doing that several times a day is going to be a battle.  More fighting.  I'm so over fighting her and causing her pain.  I wish I could just comfort her instead.

I will say that I'm glad this is all happening now and not after our appointment with her surgeon.  Now we can talk about this and hopefully get some more answers.  It sounds like this could be an ongoing problem.  What if she can't close her mouth for like... two months?  Two years?  Will this not go away until she can swallow?  Because, I have to tell you, we CANNOT live like this long term.  And her surgeon told me that if she can't close her mouth that she can do another kind of surgery in a couple of YEARS.

For now, we just have to hope and pray that Harlie will figure out a way to close her mouth.  And soon.

It's so frustrating.  You try to make one thing better, and other problems develop.  Not even problems that you could have predicted.  Because I have to tell you, right now, if this problem doesn't go away, I will regret this surgery with every fiber of my being.  I try to remember that I felt this way almost exactly one year ago.  And somehow we came through and life was enjoyable again.  That will happen again, right?

There are small periods of time when the fear of the unknown is greater than hope.  And that's where I am right now.

Oh, and another thing, the right side of her jaw looks more swollen to me (and to Terri) and she is really complaining about it.  Way more than she ever did post-op.  Tonight during her bath, her pin sites bled again.  And the incision under her jaw continues to bleed a little on the right side.  While she's not showing any classic signs of infection, I'm worried.  We've been there before - no signs of infection until it was full blown. Monday's appointment can't come soon enough.

I forgot to mention that our sweet neighbors brought up a present for Harlie right after we got home.  It took more than a week longer to get her up and playing.  This was her first true happy moment.  And she was playing with the remote control truck sweet Adam picked out for her.  He remembered that she wanted to play with his one day earlier in the summer.  Thank you Veronica and Bill - please tell Adam he made her smile, which made all of us smile.

Since it was a happy moment, I grabbed my sweet pup - who makes the days so much more bearable for all of us (probably me the most) and took a pic.  He is, by far, the easiest member of the family!

Thank you for reading and for always being there for us!

Much love,
Christy xo


Ann said...

I love Harlie's smiling face with her remote control truck. How cute she is! I love your smiling face with Rooney too. :)

I think it's a bit disconcerting that your surgeon was clueless/information-less with regard to what is going on with the stuff in Harlie's mouth given that jaw reconstruction surgery at a top Children's Hospital is what she does! I wouldn't think that what Harlie is experiencing is something new to her. In any event, I'm glad your ENT was so helpful though.

I hope Harlie pain doesn't get worse and that an infection isn't brewing. Enough already, eh?!

Love ya'

Susan said...

Yes I do think you will get back to that place again where things are better. I'm so glad you are going this Sunday to get those pins out! XOXO.