Boston, Post-Op Appointment

Harlie's follow-up appointment in Boston was Friday, October 19th.  Our flight was at 6:30am, which meant we had to be there at 4:30am.  Sounds ridiculous, I know.  But, it takes us a while to get through security, so we have to give us extra time.  So, in order to be there at 4:30am, we had to leave the house by 4:00am, which meant we had to wake up by 3:30am, and that's cutting it close.  I stayed up late the night before doing everything I possibly could to set us up for success.

Once we told Harlie we were getting on a plane the next morning, she was super excited.  She immediately went and got some toys she wanted to take with her.  Another milestone in her development!

So, when we went to wake her up in the morning (usually a VERY difficult task) she hopped right out of bed!  So, off we went and on schedule, too!

I can't remember if I've already told you the details of getting through security, but since Harlie has a pacemaker, she can't go through the normal scanning procedures.  And since she's a minor, she can't be patted down.  So, they have to call some boss somewhere and give him the low-down of the situation (where are we traveling, who are we traveling with, etc.).  This usually takes a while and we have to stand there waiting in the middle of the lines, while everyone goes past us through the walking scanner things.  After a security person comes over and talks to me and they get a female security guard to check Harlie on the other side, they let us go through.  So all of our stuff goes through the scanner, and Tom and I go through the scanner while Harlie gets pushed through a gate and we go off to the side after that.

They check all of our stuff again, by hand and they test her stroller and her hands.  The past few times her hands have come back with some alert or something.  So, then they have to test my hands and/or my clothes (depends on the airport and the security personnel).  Apparently her meds can set off the alarm because medication comes through your pores or something.  Kind of comforting to know the thing is that sensitive.  But, it adds another step and more time to our security process.

Then they make a copy of my driver's license and our boarding passes (just me and Harlie's though, never Tom's, weird).  The boss they had to call comes over and asks if Tom or I set off any alarms and then he ask us the same questions as earlier.  So far he's apologized for taking a while to get there.  Then they come back with my driver's license and boarding passes, and say thank you for being so patient, have a nice flight.  I have to say, every single time, they have all been very nice and professional.

So, as you can see, that takes a while.  So, we have to plan in extra time.  The flight was fine.  Harlie fell asleep, which is crazy strange.

But, she did have to get up really freaking early, so it was understandable.  And a welcome break for me!  By the way, forgot the camera.  So I had to use my phone.  You're going to notice that this is a recurring problem. Ugh.

My mom downloaded the book Wonder for me to my Kindle.  I haven't read a book in years (since The Help, which I loved), but I really want to read this one.  So, I pulled out the Kindle and started to read it.  And within minutes I was crying.  I knew what it was about (a 10-year old with a craniofacial syndrome, written from his point of view) but did not expect it to affect me so... much?  deeply?  I don't know, it just got to me.  I think what got to me the most, at that point (you know, page three?), was 1) that he could talk about how he felt to his parents and sister and he could ask questions and have conversations about what he had to go through (something Harlie can't do with us) and 2) how brave he has to be all the time.

I wanted to stop reading it.  But, I wanted to keep on reading it.  So, I pushed through and tried to keep reading AND stop crying.  It got so bad I needed a tissue or a wipe or something.  So, I had to ask Tom for a wipe from Harlie's bag.  When I got his attention and he looked at me, he did a double-take and was like, "What the hell is wrong with you?!"  And when I told him it was this book he rolled his eyes and laughed at me.  Well, that answers that, I'm totally going to make him read it when I'm done.  And I want to be there to watch him cry like a baby, too.

I haven't finished it yet, but it is a great book so far.  I highly recommend it - especially to parents.  There is a part in the book that reminded me of my friend, Ann.  A teacher at the main character's school teaches the students about precepts and the first one is "When given the choice between being right or being kind, choose kind."  But, even though it is really good, it is still really hard for me to read.  It makes me so sad that he has to be so brave all the time.  I can see a full post about this book in the future.

Anyway, once we landed in Boston, we took a shuttle to the hotel to drop off our luggage.  Oh!  And that reminds me, some of you may remember that during our last trip to Boston, both of our suitcases broke.  So, we had to buy new luggage.  Given the color choices of this particular luggage that Tom picked out, I opted for the green.

Well, the color green it is, and the color green it shows on the website are two totally different shades of green.  It is such an ugly color green - like pine green or something.  It reminds me of a vest (outerwear thing) that Tom and our friend Scott had and kept on trying to give to each other.  So, if they were visiting each other, one would sneak it in the other's backpack or they'd mail it to the other one.  Because neither wanted it since it was such an ugly shade of green.  And it's that shade of green.

Anyway, it rolls really nice, so that's good.  So, we took the free shuttle to the hotel near the airport.  We decided to stay near the airport so we didn't have to wake up so freaking early the next morning.  I didn't want to do that two days in a row.  And thanks to our wonderful neighbor, John, we had a nice hotel in which to stay.  Him and Jackie really spoil us!  We couldn't check in since it was so early, so we just stored our luggage there and took a cab to the hospital.

We got there early, and had breakfast.  Then headed up to see her docs.  The hospital there has a robot-thingy to deliver medical records????

The front looks like the front of a train.  It just goes by itself down the hall and then gets on the elevator.  It cracks me up every time.  I'm so easily amused!

The appointment went really well, I think.  Dr. Padwa was really, really happy with her alignment and her range of motion.  She was also happy that she has stopped drooling and is swallowing again.  She said she knew she would get it.  Seriously, she said that "it doesn't get any better than this."  I feel bad that we can't fully appreciate their skill and talent.  I will in the future, when Harlie can breathe without the trach.  But, I just don't look at Harlie the way they do.  They can see just her face, her jaw and see details that I can't see.  I just see... Harlie.  I can't really see all the details.  She pulled up some photos that I sent them prior to surgery and showed us what she was talking about.  Her chin used to be under her right eye (in vertical alignment) and now it's in the middle, the way it should be.  I don't know how I didn't notice.  Her teeth are definitely aligned.  But she has an open bite, so it still doesn't look totally "right."  She said that's just the shape of her top jaw - her back teeth touching isn't what's preventing her from closing her mouth properly.  She said that they can fix that (or make it better?) - but they can't do it until she's done growing.

So, they were able to move her jaw over a lot, and they moved it forward some (although that I cannot see).  They will definitely have to move it forward some more, but we don't know when that will be.  The rest of her face will grow faster than her jaw.  Dr. Padwa said that they will probably do jaw distraction (something I was hoping we could avoid) next time.  That is when they break the jaw and put screws and rods on both sides of the break.  Every day we turn the screws to make the rods extend in length.  This forces the bone to heal, and make more bone.  Each day when you turn the screws, it essentially breaks again and forces more bone to grow in its place.  It's not something I'm looking forward to, obviously.  And it wasn't even an option before - since she didn't have enough jaw bone.  Now that they've given her some bone (taken from her leg) they will have some bone to work with.

Here is an x-ray they took on Friday (you can see all the screws in her jaw and one in her forehead, between her eyes, from her first two jaw surgeries, which were a whole different kind of surgery).

So, in summary, the great news is that her jaw hasn't fused together, preventing her from opening or closing her mouth.  And her alignment still looks great.  In fact, Dr. Padwa said that it is "picture perfect."  I fully expected some sort of bad news - just because that's the way it usually is.  So, when she was so happy with it, my brain went blank and I had nothing to ask or say.  Ugh!

Dr. Labow came out of surgery to see us.  He agreed that she looks great.  So, we don't have to go back until next summer.

Dr. Labow, Dr. Padwa and Harlie

So, where do we go from here?

We need to see her ENT in DC for a bronchoscopy to see if we gained any space in her airway.  And then we'll need to get a capped sleep study done.  I don't think doing this in the winter will be worth it.  They usually don't like to decannulate (take the trach out) during the winter/sickness season.  It can be very difficult/risky for a newly decannulated kid to be sick while they are still getting used to breathing without the trach.

We really can't even think about that right now.  If she can't be decannulated after this surgery, it will be devastating.  And it will mean more years with the trach, something I just can't think about right now.  I just want to focus on her being happy and healthy.  And as long as we have hope - I can live with it.  I'm not ready to have that hope squashed.  So, I don't know when we'll schedule those things.  I guess I'll email her ENT in DC and ask him what he thinks.

We'll also have to get a dental/orthodontia plan.  She has a local dentist - and I love her.  But, she doesn't have an orthodontist.  And I'm thinking her orthodontist has to be one in Boston who can work with her craniofacial team.  But, that does make for a lot of traveling in the future.  So, I don't know what we'll do.  I know we're probably not going to do anything for at least another year (unless something comes up that we can't put off) so I'll probably put that on the back burner for now.

The worst thing about the appointment was them trying to get pictures of her.  What a mess!  She could not sit still for anything.  And there was a terrible delay from them clicking the button and the camera taking the picture.  It was a frustrating disaster.

Trying to get her lined up right.

Hello Goofy Girl.

Earlier silliness.

Some x-ray thingy.

Here is a picture of her at the airport on the way home.  Notice her chin and the alignment of her face...

Now look at this picture taken just before her surgery...

Now even I can see that change!  Great job, Docs!!!  Now why couldn't she just hold still like in this photo for crying out loud?!

Anyway, as we were leaving, Dr. Padwa turned around and said, "We just need to get that trach out.  Because she's beautiful."  Awww, thanks Dr. Padwa!

So, a great follow-up appointment.  Now I can focus on the other appointments I have to make.  We need to see her ENT here to see when we can do the next step in getting her bone anchored hearing aid going.  She sees her local cardiologist on Wednesday to have her pacemaker checked.  And I think we need to think about getting her back to DC to have another heart cath done to close her fenestration (a heart thing that is usually closed years before this - but we've had other things to focus on).  I bet I could just schedule all of her DC stuff for one big stay or something (sleep study, bronch, heart cath).  That would certainly be better than having to make separate trips.

Anyway, that's it for Boston for a while I think.  I had no idea it would be this "simple" - I fully expected more complications.  Knock on wood.

Okay, I'm on a roll now.  I hope to have another post tomorrow!
Thanks!
~Christy