Friday, March 6, 2020

Jaw Distraction, Take 13


March 6, 2020

Well, today Harlie has her 6th major jaw surgery (six jaw surgeries = 13 different procedures).  This was my Facebook memory on February 20...



That picture was taken in June 2008.  I was pregnant with Cooper.  This was right after her very first bone graft jaw reconstruction done by Dr. Magee at Children's Hospital of the King's Daughters in Norfolk, Va.  We had NO idea we would STILL be working on her jaw 12 years later.  We STILL have the same goal - for her to breathe without the need of her trach.  Well, that's not totally accurate.  We did achieve that goal - in August of 2015.  And we lived the good life, trach free for two great years.  We are back at it, because things didn't go as planned.  And that's just the way it is sometimes.  Well, sometimes for most people.  For Harlie, "most of the time" would be more accurate.

Anyway, I have described the weeks leading up to a major surgery as going up the first hill of a roller coaster, one slow, agonizing click at a time.  It is made worse by how difficult it is to get on the surgery schedule.  We met with her doctors in July, 2019, and received this date a few weeks after that meeting.  Rescheduling this surgery could mean waiting months and months more.  So, after she was sick and hospitalized in November, we decided sending her back to school to attend her art class just wasn't worth the risk.  Every outing comes with risks, and we had to limit them as much as possible.  But, we wanted to do something fun together as a family before we left.  Harlie loves to hit golf balls, so we went to Drive Shack (and packed plenty of hand sanitizer).


On Wednesday, I woke up with a horrible crick in my neck.  Just what you really want when you are about to travel and be under a lot of stress.  So, a trip to see my friend Scott (a chiropractor) was in order for the day.  Since it was our last day home for a while, Tom and I walked Cooper to school.  He was his normal, chipper self.   But, just a few hours later, I got a call from Cooper's school nurse.  Sigh.  She said he was tired, didn't feel good, but had no fever.  She knows our family well, and said, "Cooper never complains." He also told her that Harlie was having surgery on Friday.  So, she recommended that I take him to get a flu test. She said that they've had a few cases where kids are testing positive, despite no fevers.  Can I just tell you that this is the FIRST time I have ever had to pick him up from school sick?  FIRST time and he is in 5th grade - and it is two days before this major surgery.  The universe really likes to fuck with us.

So, I called the pediatrician, and got him an appointment for that afternoon.  Then I went and picked him up.  I had some appointments, so I couldn't take him.  Tom's mom is in town to help out, so she took him.  Luckily, no flu or strep.  But he kept his distance from Harlie anyway.

We left early Thursday morning.


Harlie wanted pink in her hair, so Caylee dyed it for her on Wednesday.  Harlie has a chunk of hair that is naturally blonde.  This happened in the last year or so (her hair turning blonde, I mean).  So, Caylee used that hair to make pink, so it shows up really well.  Harlie loves it.

We arrived in Boston and went straight to the AirB&B, which was ready for us to check in early.

Hanging together while she gets a breathing treatment.
We went to the grocery store and then we went to Sweet Cheeks for a late lunch.


Harlie loves these 3d crystal puzzles. 
While at lunch, we got the call from the hospital to be there at 6am for a 7:30 OR time.  We walked back to the apartment after lunch and I took a nap while Harlie watched a movie.  Tom went for a walk and to check out the new neighborhood.  This is an area of Brookline we haven't been to before.
When he got back, we went out together to go to the wine store and toy store.  Got some essentials from each (wine for us and a Lego set for her - just in case you were wondering) and went back to the apartment for the night.  Harlie commented a couple of times that her throat hurt.  Ugh!

I can't believe it, but we hated the red wine we bought.  I don't think that has ever happened before.  We are pretty easy to please, especially when it comes to wine!  So, Tom being the nice and more energetic one, he went back to buy something better, while I stayed with Harlie.  I told him I felt bad making him go and get something else after all the running around he's done.  He said he wanted me to be happy and I should have a better glass of wine.  After he left Harlie said, "I thought I was going to stay here by myself."  Um, no.  She really wants to be so independent.

We were all wiped out from the day (me: from the weeks, months, years leading up to this day) so we all headed to bed around 9pm.  I had a horrible time sleeping - my neck was killing me.  Every move was very painful, and I just couldn't get comfortable.  Harlie started coughing during the night.  Humidity (or the lack of) makes the nights more difficult for her and her airway.  Tom knew I was hurting and me jumping in/out of bed to tend to her just wasn't an option.  So, he got up every time.  And there were a lot of times.  Ugh!


I had a dream - or dreams - of seeing her after this surgery.  When I walked to her bed, she was a baby again.  I saw her post-op in several different ages.  I just kept telling her how sorry I was that she had to go through all this and be in pain.  It was so weird.

We got up early and got ready to come to the hospital.  Tom was able to schedule an Uber for 5:45am.  Harlie didn't look great.  I checked her sats and her heart rate (I didn't have a thermometer) was 104 (high for her).  She asked to stay in her pajamas to go to the hospital (despite the fact that just last night she was excited about a new outfit she wanted to wear to the hospital).  I felt her skin and thought she felt really warm.  My heart sank.  I felt sick on the way to the hospital and checking in.  I just knew she had a fever and they were going to cancel surgery.




They called us back into pre-op and took her vitals - 98.6 was her temp.  Sats were 86.  Great for Harlie.

So, what was that?  Did my mind just make up that she was getting sick?!  WTH?!  Oh, this life is so hard sometimes.

Dr. Padwa stopped by on her way in (she still had her coat on and was running to get something in before she was due in Harlie's surgery).  She asked if I was okay. I said yes, of course.  But she said I looked tired.  Well, that's funny, because I feel tired!  After she left I asked Tom if my face looked tired.  He said, "Yes.  You are wearing your stress in your face."  Haha!  So funny, because that is exactly how my face feels!  A few minutes later I put some lip gloss on and he mumbled, "That's not going to help."  Haha!  He does make me laugh.

We met with her surgeons, an ENT, nurses, etc. and signed all consents.  Her anesthesiologist greeted me with a big hug - I feel so special!  Dr. Vinson showed me a pic on her phone - it was a selfie of her wearing her We Heart Harlie shirt (I gave it to her in July) this morning!  How great is that?! It is very rare to have such a great connection to an anesthesiologist.  And at well over 60+ surgeries, I think I would know.  Dr. Vinson was Harlie's anesthesiologist the night she was emergently retrached 2.5 years ago.  Still feels like yesterday...

Her surgeon brought her 3D jaw so we could see it.  So cool.  It is so much smaller than I was anticipating.  I guess she is still pretty tiny...


If you zoom in, you can see where they have already tested out where they are going to make the cut in her jaw and the holes where they will attach the cutting guide.  Dr. Resnick said he thinks it will be about four hours of him actually working on her.  But, an ENT is going first to scope her airway and she is going to change her trach to a cuffed trach (for better ventilation while on breathing support).


And here is our girl before going back.  She is such a champ.


They took her back a little after 7:30am.

At 9:45am they called to tell us that the ENT was done with her part and Dr. Resnick was starting.

I'll end this post now and will start a new post later today.  Please forgive any typos - my brain is not working great.

Thank you for taking the time to read this blog.  Thank you for thinking of Harlie and our family.  Thank you for commenting, wearing your We Heart Harlie shirts and offering up your support in any way you know how.  Thank you for the love - please know that we are soaking it in!

Much love,
Christy xo

7 comments:

Anonymous said...

i hope the surgery goes well


sara

Anonymous said...

Thanks for the update. Prayers for all of you.

Natalie said...

Thanks for the update.

Harlie is awesome. That last picture you put of her smiling is so beautiful.
Hang in there!

Marge said...

Even though we don't know each other, I think of your family often. I still have PTSD after my son with HFM had 1 jaw surgery. You all are amazingly strong. Wishing you all well and sending prayes for an uncomplicated and successful surgery. Hang in there!

Marge said...

Even though we don't know each other, I think of your family often. I still have PTSD after my son with HFM had 1 jaw surgery. You all are amazingly strong. Wishing you all well and sending prayes for an uncomplicated and successful surgery. Hang in there!

Robin Kargoll said...

Over all the years of reading your blog Christy it does come through how hard and tiring this is for you, and how amazing Tom and the boys are after everything you all have been through. I wonder if Cooper was depressed about Harlie’s surgery and not physically sick?
I’m sending you all love and hugs.
Robin

Robin Kargoll said...

Over all the years of reading your blog Christy it does come through how hard and tiring this is for you, and how amazing Tom and the boys are after everything you all have been through. I wonder if Cooper was depressed about Harlie’s surgery and not physically sick?
I’m sending you all love and hugs.
Robin

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