Post-Op Day 3

She is definitely more swollen today.  But they say the third day is the worst.

And she's still holding on to a lot of fluid.  After two IV doses of Lasix, we haven't really made any true progress.

At 8am cardiology rounded.  Loved this doc and how kind and thorough he is.  When they put the IV in yesterday they got some blood for labs.  Her white blood count (WBC) is high, so they are going to start a broad spectrum antibiotic.  They also got some of her secretions last night to culture.

Her lungs sound coarse and crackly.  So it sounds like she's worse today than yesterday.  When she cries, she makes NO sound at all.  Which means she is swollen around her trach tube (usually there is a leak around, which allows her to make sound).

In order to get her home, she has to be fluid balanced - or at least heading that way - on oral (well, through her g-tube) Lasix versus IV Lasix.  He said if the IV Lasix works, and they send us home to find that the oral kind doesn't work, then we'll be in trouble.  So, she needs to get rid of lots of fluid, get switched to oral Lasix, keep the fluid off for a while, before we can be discharged.

Unfortunately, her second IV blew.  So, they have to start another one.  Plus, get more labs.  They want to see what her WBC is today in comparison to what it was yesterday.

I turned her screws this morning and afternoon.  Only one more time today.  They are getting harder to turn already and it is really hard to do it.  It grosses me out and I know it hurts her.  So, to cause more pain for her is awful.  Truly awful.  Especially since we have to turn the screws three times a day - which is six times per day since there are two sides!  Plus, we have to clean the pin sites whenever they need it.  We have to keep those sites clean to reduce the risk of infection.  If she thinks it hurts now, I don't even want to think about how much it would hurt if they got infected.

I think she is going to give herself a brain injury with all the thrashing she's doing.  She swings her arms until you hold them down, then kicks until you hold her legs down, then she starts throwing her head forward and backward and side to side.  It is so awful.

I've had to show some pictures of her to her nurses so they know what she really looks like.

The IV team just came in to start a new IV.  It took four of them to get it in.

Can you imagine how scary this is for her?  Four nurses in gowns and masks inflicting pain, and your mom sitting in the room, not stopping it.

In summary, this is what has happened today:

Had to start an IV.
Had to get labs, not utilizing the IV, so they had to poke her and take blood that way.
Had to get more labs, but from two different areas of her body.  So two more pokes.
Had to clean the pin sites.  Still need to do it one more time today.
Had to turn the screws, two times on each side.  One turn per side still to go tonight.
Got two x-rays.
Got an EKG.

If you only knew how hard she fights all of that stuff.  She is WIPED OUT.  This room is freezing and she's a sweaty mess.

I have to say that her nurse today was very apologetic to Harlie.  I could hear the compassion and sincerity in her voice as she told Harlie over and over again that she was sorry.  She said the night nurse was going to have to clean her pin sites - she just couldn't inflict any more pain on her.  I hear ya, sister!

Well, as you might be able to tell, I work on my blog post throughout the day.  So, things are constantly changing.

I just spoke to the doctor again (love him!) and he said her WBC went from 25 to 30, which is high.  They also did another test that tells them the cause is most likely bacterial versus viral.  And based on her most recent x-rays, they are suspecting that she has pneumonia.  They are having Infectious Disease (ID) consult to see if they can target the bacteria a little better so they can get the right antibiotics in her.

We have taken a few steps backward.  And there is definitely no more talk about going home.

Here are the meds she's on right now:

IV Gentamicin
IV Lasix
IV Clindamycin
Oxycodone
Advil
Ibuprofen
Aspirin
Enalapril
Miralax

We'll see what ID says tomorrow when they come to see her.

Tom should be finishing his 200 mile bike ride anytime now.  They started at 6am.  It is now 8pm.  I hate that he is doing something so difficult and I'm not there to support him.  He is always so supportive of me when I run races.

Well, I'm going to go now.  Thank you so much for all your incredible support.  All of your kind, heartfelt messages are really helping me get through this.  I knew this was going to be tough.  And it is.  And will continue to be for a while.  Please know how much I truly appreciate you taking the time to comment, text, email or call and say nice things to me.  I can't respond as much as I would like.  But, I am feeling the love.

Much love back,
Christy xoxo

Post-Op Day 2

She's been sleeping a lot.  Both today and yesterday.  She's also holding a lot of fluid.  She's almost two liters positive - and still not peeing.  So, they gave her a dose of Lasix (a diuretic) through her g-tube.  That didn't work.  So they had to start a new IV to be able to get her an IV dose of Lasix.  They did that a while ago, and she still hasn't peed.

They've tried weaning her off the oxygen - several times.  But, that has not been successful so far.  Hopefully if she can get rid of some of the fluid she's holding on to, her sats will come up a bit.  But, just in case, a portable, airplane approved, oxygen concentrator is being delivered tonight.  We're going to take it home with us, regardless of what her sats do here.  I have a portable pulse ox and can check her sats on the way home and use it as needed.

The plan this morning was to leave her on the plastic's service (meaning that her plastic surgeon has to write all orders and make all final calls) and switch her to cardiology's service tomorrow if it looks like she needs to stay a bit longer.  But they switched her today.  I think all the orders for the Lasix, labs, the oxygen to take home, etc., just got a little much for plastics.  At this point, she really should be on cardiology's service, since what's keeping her here isn't plastics, but her heart and lungs.  That's another reason why she should go to the cardiology floor post-op from all surgeries.  Must remember that!  I think I want to believe that she's FINE and we can focus on what brought us into the hospital.  But, that's just not the case.  Her body takes a beating when she undergoes surgery and that's just the way it is.  Poor girl.  Some things just don't seem right, you know?

We were hoping that we could go home tomorrow (Saturday).  There is a late afternoon flight, which would give us enough time to check out of the hotel and get discharged (never know how long that's going to take) and get to the airport.

But, honestly, it's hard to imagine taking her home - with the travel involved - with how things are right now.  She really does seem miserable.  And very, very sleepy!   Although she woke up when she heard me taking her picture.

Day 2 Post-Op

Day 2 Post-Op

The bruising has gotten worse.  Especially on the left side.  And she's scratched her face all up from all the fighting she's doing.  She's beginning to fancy the karate chop and pinching my arm - especially when turning the screws.  I can't say I blame her.  This is really awful for all of us.  I wish I could just scoop her up and be only a source of comfort for her.  But, that shipped sailed a long time ago.  Sigh.

Yesterday Tom and I were coming up the elevator with a man pushing a woman in a wheelchair.  We got off on the same floor and they went into the NICU and we went into the ICU.  Clearly, she just had her baby and was being wheeled over from the hospital next door.  Tom said, "Don't you want to say something to her?"  I said, "Like what?" And he said, "You know, that it will get better."  And I said, "But we are STILL here!  Six and a half years later.  I don't think that would be very comforting to a new mom."  He said, "Well, you wouldn't have to tell her that part."

So sweet of him to see a new mom and remember what it was like for us all those years ago and want to offer some comfort and hope to someone else.  Been there.  Done that.  Still doing it, actually.  On our way back from lunch a helicopter landed on top of the children's hospital.  Both Maggie and I looked up at it.  Then I said, "Been there.  Done that."  We both laughed - Maggie was thinking the same thing.  Oh, the memories!

This afternoon we actually got Harlie up and out of bed and took her for a little walk around the unit.  She did really well all things considered.  She definitely complained and held her hands up for me to pick her up several times.  But, I was strong and let her take a break and made her continue walking.  Walking will really help recovery.

Tom left this afternoon and flew to DC.  Tomorrow is his 200 mile bike ride! If you could send him some good wishes, that would be great.  I think he is nervous.  But he has been very dedicated to his training for six months.  I really think he will do great.  I just want him to stay safe.  

Okay, it is late so I'm going to wrap this up.  Harlie is all cleaned up for the night and sleeping soundly.  Hopefully she will turn the corner tonight, get rid of a lot of that fluid and feel better tomorrow.  I'll let you know!

Thank you!!!
~Christy xo

Post-Op Day 1

So far, so good.  She is definitely more swollen and bruised today.  And I'm guessing she might even look worse tomorrow.  But, overall, not too bad.

She's not coughing much and her breathing is back to her baseline.  She's still on some oxygen support, but that's totally normal for her.  So, everyone is happy with how she's doing so far. 

I can't remember if I told you in the last post that she has already asked for water.  Which is nuts.  She asked to drink water yesterday - something I don't think she has ever done immediately post-op.  Especially after surgery on her jaw!  She tried to drink from a straw but couldn't get the suction going.  So she sipped out of the cup and kept asking for more.  She amazes me.  She's continued to take sips today, too.  

The surgeon came by this morning and took a look at her.   Her orders were to clean the hardware sites.  The blood is following them out of the body (they are kind of acting like a drain).  So she wants that area kept clean (I'm guessing to continue to allow the blood to drain out and then stop on it's own instead of it scabbing up and then preventing the blood from coming out).  Well the nurse tried, but Harlie wouldn't let her.  Oh, Harlie.  So, this morning Dr. Padwa told me that and then said, "So, you're going to have to do it." Great.  

So, a nurse came in to help me get her all cleaned up.  Harlie did put up a fight.  But, with the two of us, we were able to win.  And I was pretty darn proud of myself that I could clean her up so well.  I think my side was cleaner than the nurse's!  So when I changed her trach ties, I went around on that side and cleaned it, too.  I know she feels so much better!

Harlie's IV started leaking, so they took that out, too.  And I'm so thankful that they said they didn't have to start a new one.  Woohoo!  After we got her all clean she signed "potty."  So we took her to the bathroom and she peed!  So, that's really good.  

Oh, and when Dr. Padwa was in this morning, she showed us how to turn the device.  Here is the tool we have to use.  

The tool makes it pretty easy to do.  As long as Harlie doesn't thrash all about.  We have to turn it three times per day.  We can do it in any way we want - all three turns at the same time, or spread the turns out throughout the day.  Right now it is pretty easy to turn.  But she said it will get harder (meaning it will have more resistance).  Ew.  So, I don't see me wanting to make three turns in a row.  I think we'll spread it out for now and see how that goes.

Here is a close up of the hardware.

She used her old incision scars to access her jaw, so she wouldn't make new ones.  Her right side is the more abnormal side, so she had to spend more time working on that side, which left it more swollen than the left.

The pictures really don't do it justice.  She looks so big and square.  Well, she has a jaw now, whereas before she really didn't.

As far as what our plan is... well she is being moved out of ICU and onto the floor sometime today.  Of course there was some discussion as to which floor to send her to.  The cardiac floor or the surgical floor?  Do I want someone who's good with the heart or someone who's good with the wounds?  I'll take both, thank you.

When I was asked what I thought (very nice to ask for my opinion) I told him that it is difficult to be on the cardiac floor (or under primary cardiac care) when we are not there for cardiac reasons.  I just don't feel like we fit in.  They are usually dealing with far more serious situations.  Plus, I need the nurses that know how to take care of her incisions.  As long as the surgical nurses know when they need to call cardiology to come and look at her, I'm fine.  So, that's where we're going at some point today.

Dr. Padwa said we can take her home whenever we are comfortable and ready.  Our plan is to take her home and then bring her back for her follow-up appointment versus us staying in the hotel here until her next appointment.  I just don't have what I need (oxygen, humidification) to feel comfortable doing that.

Tom will fly to DC tomorrow afternoon.  He is riding in an ultra cycling event called the Total 200 on Saturday.  Yes, he will be riding his BIKE for 200 miles.  Crazy.  My niece Maggie, is flying up tonight to stay and then help me get Harlie home.  I think we are going to shoot for flying home on Saturday.  Our goal is to get her on room air and off the supplemental oxygen.  If that doesn't happen in a timely manner, then I will get the hospital to get me the portable oxygen again and will take her home on that.  I just want to make sure I have whatever I need to get her home safely.  Hopefully we can secure these arrangements tomorrow morning.

And then we will fly back up here next week to see Dr. Padwa again.  I'm tired just thinking about it.

Okay, so we just got moved to the floor.  They didn't have the room set up for her trach.  So that was a scramble.  Then the nurse said this was the cardiac floor.  So, I said I was confused since I just had that conversation with the ICU doc earlier.  So, a few minutes later an attending showed up and said, "I heard we had a problem?"  Ugh.  I really didn't mean to cause a problem!  I was just confused since we were not in the place I was told we were going to go.

Well, the attending said she really can't go anywhere else because those areas aren't set up to monitor heart patients.  Oh!  Yes, I remember this being an issue before.  Plus she said those nurses would see her numbers and would call a code.  I think she was sort of kidding.  Anyway, problem solved.  We'll be here and that's fine.  It's a private room with a window.  And with any luck, maybe we'll get a view of the fireworks.

We just cleaned her up again.  I really hope she'll get used to this stuff soon.  And we (okay, Tom) turned her screws for the last time today.  Tom said, "Three turns a day for 25 days - 3 turns down and only 72 to go!"

We've talked to the boys and Tom's mom a few times.  They are having fun.  The other night Tom was talking to Cooper and gave me the phone.  I said, "Hi Cooper!" and it was as if he wasn't expecting me because he paused and then his voice got soft and he said, "Mommy, I love you."  He's such an affectionate little guy.

Yesterday, Tom's mom said that Murphy was quiet all day.  When she asked him if anything was wrong he said, "I'm just worried about my sister."  Poor kid.  It will be way better when we all get home together again.

Maggie just got here.  And Harlie is sleeping soundly.  And our night nurse is one that we had last time and loved.  And she has a helper tonight - and they only have two patients!  Awesome!

Thanks for all the love and support!
~Christy xo

Surgery Day

I wasn't able to blog yesterday (surgery day) so I'm going to write two posts today.  This one is for yesterday - July 3rd.

As I mentioned before, we were getting concerned that she was getting sick.  My gut was telling me she wasn't - that she was just adjusting to the drier air here (way less humidity than what she's used to at home).  But, I really couldn't be totally sure that it wasn't a touch of wishful thinking.  By Tuesday night, I was preparing myself for disappointment.  Not that I really want her to have this surgery.  But, I want the potential results - asap.  And there's no getting around this surgery anyway.  It is not elective.  It must be done.  So, let's just get it over with and possibly reap the rewards in a few months.   So, not getting it at this point would be a disappointment that would be difficult for me to get over.

She had an okay night.  Not a lot of suctioning.  But her oxygen saturation levels were all over the place.  And she was breathing rather hard for her.  My thought was that her body was having to work harder to maintain her sats, so she had to take more breaths per minute than typical.  She was not sick.  Hopefully.

Surgery was scheduled for 8:30, so we had to have her there at 7am.  Tom and I didn't talk much on the way there.  We were sad.  We got there and got her all checked in.  When they took us back to start the whole process of preparing her, there was a lot of discussion about how she was doing.  I told them what my thoughts were.  They listened to her lungs (clear!) and she had no fever.  Her sats were about 83 (which is kinda low for her).  But to be honest, I was pleasantly surprised they were that high.  Although low sats alone would not bother me pre-operatively.

I was not too confident in my opinion on what was going on with Harlie because I was afraid my desires were swaying my opinion.  So once anesthesia came to talk to us (and we went over everything again), they asked us how we felt about it.  I told them that I thought I was too vested emotionally, and financially in having this surgery today to be able to make the final call.  I wanted them to do it.  Luckily, they agreed with my thinking and said they felt comfortable with her having surgery.  YAY!  They said that if she were supposed to go home immediately after, no.  But, since she is going to the ICU, they can support her and give her IV antibiotics, etc.  Plus, she had the same anesthesiologist as last time, so he knew her.  Awesome!  So, it was a go!

Here Harlie is focusing on Spongebob on the iPad to get her through this.

I love that they don't make me change her clothes.  They said they could do it once she was under.  So it wasn't worth upsetting her.  Then they let me walk with her all the way into the OR and I stayed beside her until she went to sleep.  Poor kid.  I hope one day her and I will be able to have long talks about what she remembers and how she feels.

And here is the empty stroller we pushed around most of the day...

Surgery took about four hours.  Dr. Padwa came out and said that it went great.  No problems whatsoever. Just what a parent wants to hear!

Here she is about an hour post-op...

Hopefully the ice packs will help minimize the swelling.

And here she is already up and asking to watch TV.  If you look at the picture closely, you can see the metal  sticking out right under her ear.  That is what we will turn every day.  The metal is actually springy - so it's flexible.  Which has got to be more comfortable than a rod!

She slept a lot on and off, of course.  And she wouldn't pee.  She tried, but she just couldn't.  By about 9pm, they had to cath her since it had been since 6:30am since she had gone.  And that was after being loaded up with fluids in and out of the OR.

Tom and I went to dinner at a place we found last time and loved, Church.  Just a few minutes after sitting down, the manager came up to us and said, "Are you Tom and Christy, by chance?"  Then he said that dinner was on the Young family in Richmond.  Seriously?  Tom had "checked in" there on FB and BAM!  Sally was on it!  We are just overwhelmed.  All the time.   It was a wonderful dinner.  And we really enjoyed being able to sit down, relax, take a deep breath, and drink a couple glasses of wine.  So, thank you Sally and Glen!!!

After dinner we walked back to the hospital and hung out with Harlie for a little while.  At about 8:30, I asked her if she wanted to go night-night.  And she nodded her head and closed her eyes.  So we said good-night and gave her kisses and walked back to the hotel.  By that time, I was way too tired to write.  I have not gotten adequate sleep for the last four to five nights and I don't think I realized how truly tired I was.    This emotional up and down, changing gears kind of thing, can really wear you out!

Okay, so that was yesterday.  Now I will write about how she's doing today.  So, check back soon.

Oh wait! One more thing...

While we were in the waiting room, we were overwhelmed at the amount of support we were getting on Facebook!  So many pictures of people wearing their We Heart Harlie t-shirts!!  So many messages of love and support to read.  What a wonderful way to pass the time!  There's simply no way to ever tell you how much that means to us and how much it truly does help get us through the hard times.  So, thank you.

Much love,
Christy xoxo

Aquarium

Today was the aquarium day.

The center tank (which is the main attraction) just re-opened yesterday after a 10-month renovation project.  How's that for timing?  I thought it would be better to head down there around lunchtime (versus being there when they opened) since that's when most people would probably be leaving.  We took the train, which she was excited about.  But there was still a very long line.  We stood in it for about 30 seconds, when an employee came up to us and told us that we could go straight inside and purchase our tickets.  They are so awesome there.  And then, inside, they only charged us for Tom and I and not her.  Awesome.

Yes, we had hand sanitizer and used it often. After there we wanted to take her to the carousel, but it's under construction and re-opens Labor Day.

Surgery is scheduled for 8:30am, and we need to be there at 7am.  At this point, I don't know if it will happen.  We got a humidifier for the room.  The thing that kills me is that if we were home, she wouldn't get like this because I would have already upped her support.  Well, she was FINE before coming up, so maybe she caught something on the plane.  Maybe she's just dealing with the dry air.  Who knows.

We've come this far, might as well give her another night and see how she is in the morning.  I'll let them listen to her lungs, take her temp and see what they think.  I'm tired of thinking about it.

I'll let you know what happens.

Thanks for all your thoughts and prayers!
Much love,
Christy xoxo

Monday Night

We are being very lazy this morning.  Last night was not fun.  Her oxygen saturation levels were all over the place.  Within seconds they would drop from 83 to 73.  I checked the probe, because that just doesn't make any sense.  Even though she was asleep, she wasn't in a deep sleep because she wouldn't let me look at her toe (where the pulse ox probe is connected).  As soon as I would lift the cover off her foot (ever so gently) she would kick.  She is something.

For hours I laid in bed watching her pulse ox and listening to her breathe.  She is so dry!  My guess is that she's getting some mucous plugging in her lungs, which is negatively affecting her sats, since she relies on every little part of her lungs.  When one little alveoli isn't exchanging oxygen, it makes a difference.

Anyway, I gave her several breathing treatments and saline jet nebs.  But what she really needs is some major humidification.  At 1am I had to look online to see if one of the local drug stores was open so we could go buy one for the hotel room.  I think she needs something way stronger than that, but I was thinking it was worth a try.  Desperate times...

During all of this I was thinking about two things:

1.  I need to accept that she might not be able to have this surgery tomorrow.  That is so much easier said than done.  The bottom line is that I would never want to put her in harm's way, so it's simply not worth the risk.  But, we've done so much to prepare for this!  As much as I need to let things be the way they "are supposed to be" we would be very disappointed, to say the least.  I would hope that her surgeon would work her in her schedule later in the summer, and that it wouldn't put us back into NEXT summer.  Ugh.

2.  If she is really getting sick (which I really don't think is the case) we don't have what we need to support her medically, here in this hotel room.  ACK!  We don't have oxygen.  And since I am using WAY more saline bullets than I've ever used before - we are running out.  And I'm afraid I might not have packed enough suction catheters.  We never go through this many!  These are not things that your average drug store carries, either.  This is why it's so difficult to pack for her.  You have to prepare for the unexpected, and know you can't go buy what you forgot.  It's been very unsettling to think of supporting her intensely when we are not at home.  She's either been in the hospital, or home when sick.

She woke me up at 1am because her breathing was so loud and fast.  I have never heard her breathe like that before.  Which is another reason I don't think she's getting sick.  I really think she's got some plugging in her lungs and so she's having to breathe harder and faster to over compensate.  But, that is a real worry, because what happens when her body gets tired of working so hard?  And I don't want her body working this hard before this surgery (assuming she's not sick).  Which is why I would have turned on her humidification and oxygen (if we were at home) to support her.  Ugh.

Since we are running out of saline bullets, I thought we would try putting water in her nebulizer to see if it would create some humidification for her.  It definitely created a mist and she seemed to improve afterward.  So maybe that did the trick.  We are going to run this nebulizer into the ground this week.

She woke up early this morning (something she RARELY does and something she NEVER does when she's sick) and was all smiles.  She's acting completely FINE.  I am looking at everything so closely and even though I want this surgery to happen tomorrow, I really don't think I'm in denial.

I guess we will see how she does when we venture to the aquarium today.  We just have to get through one more night...

Then, I had another thought...

If she does have this surgery - I will NOT be comfortable bringing her back to this hotel room without adequate humidification and oxygen support.  And I don't know how that's going to happen.  In order to run the humidification, you need an air compressor.  It's heavy, and loud.  At home we put it down the hallway, away from our bedrooms.  And being in a hotel room, that can't happen.

So, if surgery goes as planned, we'll have to figure out something.

Never a dull moment.

Okay, must get moving.  Harlie is asking me to fix her hair, brush her teeth and get her dressed.  She doesn't exactly get that we are being lazy.

Thank you for all your thoughts and prayers!
Much love,
Christy xoxo

Pre-Op Day

Last night (Sunday) Harlie didn't have a great night.  I was up until after 1am suctioning her quite a few times and giving her breathing treatments.  Her oxygen saturation levels weren't great, but weren't terrible, either.  I felt like I was holding my breath and hoping that it wasn't the beginning of some sickness.  

As soon as I woke (um, 5:30am unfortunately) I gave her another breathing treatment.  We took a while to get moving and finally left the hotel around 8:30 or so.  Our first appointment was with cardiology at 9:30.  She just saw her cardiologist on Thursday of last week and had an echo (ultrasound of the heart) done then. But, she was very uncooperative (crying, thrashing and pushing the tech away) so the echo wasn't the best.  And crying affects the echo (the pressure causes shunting of the blood in the heart - or something like that).  So, they wanted to try again here.  

The tech here was able to spend more time doing the echo.  But probably only because Tom was with me to help me try to calm her down.  It doesn't hurt.  The tech just puts some goo on the wand and rubs it around her chest.  I guess she might have to press a little, but I'm sure it doesn't hurt.  But Harlie is now super protective of her body and very distrusting of people in hospitals.  

I assume they had the same results as the tech in Richmond on Thursday because the tech went to talk to the doc about it and they are going to go into the OR on Wednesday when she is under anesthesia and get a full echo then.  

After that, we headed over to pre-op.  While there we went over her history, meds, etc.  She was so quiet.  I know she can hear and understand a lot of what we're saying.  Tom and I talked to her a little bit last night and told her she would have surgery, but that we would get through it.  She looked sad, mad or sick in pre-op today.  So, between people we had to see, I asked her if she was mad at me.  She said no.  I told her I loved her and she didn't look at me.  And she didn't tell me back.  Ah, and so it begins.  

Then we met with someone in anesthesia.  After going over her history (again), she said that Harlie is a very complicated little girl.  Yes, we know.  But, sometimes we do forget what that means to the people who are responsible for keeping her safe and sound while the surgeons do their work.  

And I was reminded of when she had her first jaw reconstruction (June of 2008, she was almost two) and the anesthesiologist came to talk to us.  He said, "Hi Harlie!  I've been thinking about you all weekend!" I said, "Really?"  And he said, "Yes! She's got a lot going on."

Anyway, she asked us if she's ever scared us.  Yes, this is the post when she scared us.  A couple of weeks ago I was chatting with a friend who's been scared of losing her daughter, too.  Okay, all parents are "scared" of losing their kids.  I don't mean that.  What I mean here is when their lives have actually been threatened.  Anyway, she asked me what I'm afraid of with this surgery.  Such an interesting question - and one that is only asked by someone who's been there.  

So, my answer?  I'm going to be completely honest here.  I'm afraid of losing her.  I'm afraid of something going wrong.  I'm afraid that her heart will say - that's enough!  And I'm afraid of this not working.  And that's what occupies my mind - for months - before a surgery.  It feels like we've been on the up part of the roller coaster for a really long time. I'm ready to be on the other side, and have all of these worries behind me.  Then I can focus on her recovery - and making her feel better and happy.  And I would MUCH rather focus on those things.  I have feared Harlie's death long before she was even born.  I suppose that I always will.  It sucks.  And it's NOT the way it should be.  But, I am grateful.  And I will never take her for granted.  Ever.  Considering her prognosis prenatally, every day is a bonus.  I would just like there to be MANY more days.  Like years and years and years of them.  

Okay, enough seriousness...

Harlie was doing a lot of coughing during these appointments.  And she needed lots of suctioning.  And she looked like she felt bad.  Her head was bent down.  She wouldn't answer any questions.  The anesthesiologist asked us if she was sick.  Um, no?  Not yet?  They checked her sats and they were 89.  Whew!  That's great!  And she listened to her lungs - sounded great.  So, she's officially been cleared for surgery.  For now...  Of course they will check her again Wednesday morning. 

We've definitely been worried about her today.  But, the air is different up here (less humid).  So that could explain the stickiness of her secretions.  And she keeps taking off her HME (humidifies the air she breathes), so that doesn't help.  Fingers crossed it's just that.

On our way out of pre-op I asked Harlie if she knew that she was going to have surgery.  She nodded.  Then I asked her if she was scared.  She nodded again.  She really does break my heart.  And I can speak from experience when I say that it really does get harder the older she gets.  I saw a young teen in the pre-op waiting room.  She appeared to have Goldenhar Syndrome, too.  And it made me wonder when it will ever end.  When will she be free from surgeries?  Ugh.  We definitely left there with heavy hearts.  

Our next appointment wasn't until 2:30, with the surgeon.  On our way out of the hospital, Harlie wanted to look at the ball machine in the lobby. 

After a while of standing there, I asked her if she wanted to go to the gift shop.  If it didn't make her feel better, maybe it would help me.  So I told her she could pick out one thing.  But, to be honest, I would have gotten her anything she wanted if it would make things better.  She picked out a Playmobil set.  

Then we walked over to the Squealing Pig for lunch, a favorite from our previous stays.  And we were spoiled, yet again.  Lynda, the creator and organizer of We Heart Harlie had a gift certificate waiting there for us.  Thank you!

Here's to you, Lynda!

Blueberry beer.  Yum!

We ate and drank and Harlie played with her new Playmobil set.  With Tom's help, of course.  She loves it.  It pumps water.  Right up her alley.  

Then we headed back to the hospital for our 2:30 appointment with Dr. Padwa.  

As those close to me know, I have been dreading this surgery and recovery for months!  Well, I am THRILLED to tell you that it might not be nearly as bad as I thought it would be.  

Here's the gist...

The goal is to move her jaw forward 25 mm (which is 1 inch).  The distraction device company then fabricates the device to do that.  So, she feels pretty confident that it will work.  Has she had some that didn't work?  Yes.  But, she's pretty confident that it will work for Harlie.  

And for those of you who don't already know - the surgeon will cut her jaw on both sides then attach this distraction thing on both sides of the break.  Where the bone is cut, it will heal and grow new bone.  Each day, we turn the screws and it essentially re-breaks the bone, promoting more bone growth.  These are my words here, not hers.  

Here's what I expected the device to look like...

  

Or this...

But I was wrong.  And I have never been more happy to be wrong in my whole life.  

Dr. Padwa is using a device that goes under her skin!!!  You'll barely see it.  She will try to use her current scars for the incision so she doesn't make new ones.  And the screw part that we will turn is the only part that will stick out.  And that will be almost behind her ears.  Can you believe it?  

And I thought we would turn the screws for six weeks.  But we will only turn them for about a month.  Awesome.  They expect it to grow at a rate of 1 mm per day, so we will basically plan on turning the screws for about 25 days.  

I also thought we would be inpatient for at least a few days.  I mean, you never know with Harlie.  And today, she said the same thing.  But, as long as Harlie's heart and lungs stay healthy - she will only spend one or two nights in the hospital!!!  CRAZY!  

We will then be discharged, but we will need to stay here in town.  Because she will need to see her again in a week.  She said she likes to see her patients two times per week during the distraction period (those 25+/- days).  But, I can't be flying her up here two times a week.  Well, I don't want to fly her up here two times a week.  I will if that gives us the best chance for successful results.  But, she said she knows a doctor in Northern VA who did his residency under her last year.  She said he has seen enough of these that she trusts that he could see her if that makes things better for us.  So, she's going to see if she can set something up.  

We also talked about me taking pictures of Harlie's mouth and teeth and sending them to her.  She might be able to see what she needs to see that way.  She said she just looks to make sure that the jaw is moving forward.  

So, we'll play that whole thing by ear.  

After the 25 or so days, we will return to have her remove the screw part that will be sticking out of her skin.  But, she will leave in the rest of the distraction device.  The longer that stays in place, the better.  So, I think she said that will stay in for about three months or so.  So, we'll have to return again in the fall sometime to have that removed.  

Whew!  Are you tired of reading about this yet?

It's definitely a better situation than I was expecting.  But, it's also a lot more travel than I expected.  I'll take it, though!

As I've said before - there are no guarantees.  She can't promise us anything.  The unknowns are:

1.  We're dealing with abnormal bone and structure.  There's no guarantee it's going to do what we want it to do.  Dr. Padwa had some 3-dimensional print outs of her jaw that showed what her structure looks like now (with the bone from her leg) and how to place the device.  It's crazy.  They are going to give me the print outs on Wednesday and I'll post them so you can see.  

2.  There are no good studies that can show what is going on in your airway while you sleep.  Of course there are sleep studies - but you can't actually see what's going on in there!  We know there is an upper airway obstruction.  And we know it's in the area of the base of her tongue.  So, that's the area we try to make better.  She said that doesn't mean that there aren't other obstructions that we don't know about.  I really think this is more of a disclaimer.  We're just going to move forward and hope for the best.  And I'm not going to worry about those other things until they come up.  

So, all in all, I think the recovery is going to be WAY better than I thought.  She said she will have some pain and we'll work to keep her comfortable.  

Then they took some pictures of her and we left.  

We walked back to the hotel and stopped by Trader Joes, which is right across the street.  We got some wine and some fruit.  Then Harlie signed "night night."  And it was about 4pm or so?  No where near her bedtime.  

The second we got into our hotel room - she perked right up.  She was right back to her wild self jumping on the bed and being goofy.  All smiles and silliness.

That little sneak!  

So, either your prayers worked and she's really better.  Or her mood is drastically affected by being in the hospital.  

Crazy.  

Oh!  And one of the nurses today told us that the New England Aquarium's main tank has been under construction for months.  And they just re-opened!!!  See, we are so lucky!  I don't know if they replaced the tank or just fixed it.  But they did lower the railings around it so smaller kids could see over it.  Awesome!  So we are going to take her there tomorrow.  

Okay, I have been working on this forever.  I would like to go enjoy my wine and quiet time with Tom.  So, I am signing off.  Please know that even though we feel so sad sometimes, life has a way of giving us something to be happy about.  So, somehow we just bounce back.  

Thank you so much for all your thoughts and prayers!  We are feeling the love!  And we are so grateful!

~Christy xoxo