Two weeks down, six to go.

Hi,

I'm sorry it has been so long since my last post.  I have so much I want to say.  I've started to write this post several times.  But, it has been hard to write because I've had not much to be positive about.  This has been so incredibly hard on all of us.  I can tell you at least three of us have cried more than once.  And that almost never happens. And, needless to say, the craziness in the world right now has NOT been helpful.  I'll save some of that for my next post.  Here's the basics for now, until I have more time.

We left the hospital on Thursday, March 12.  Dr. Resnick stopped by and we went over our instructions one more time.  My main concern is infection - there are 8 pin sites that I have to clean twice a day.  So, what if she gets a fever?  Where do I take her?  Our local hospital?  Children's National in DC?  Boston?  And what if it looks infected, but there's no fever (especially since she is on Tylenol and Motrin around the clock)?

We've had several experiences with Harlie developing infections post-operatively, with no fever.  Those have both resulted in scary situations (cardiac code in the OR after jaw reconstruction and an infection in her back after spinal fusion which resulted in an emergency surgery).  Those were both really traumatic experiences for me - as I believed there was something wrong, but it was hard to get her doctors to think the same.  Here is the post where I posted a picture of her infection (again - with no fever!)  In both situations, she had to come home with a PICC line so we could give her IV antibiotics for six weeks (since they were both bone infections).

Anyway, those traumatic experiences don't go away.  They are still fresh in my mind as if they happened yesterday.

Back to her leaving the hospital - I gave her a shower there and got her all clean and "ready" to travel home.

Her team there was so great - I can't say that enough.  They got all her stuff ready so that we could leave whenever we were ready - and didn't have to wait on them.  And they came by to say good-bye.  They were all so compassionate and kind.  I know it sounds odd, but you don't always get that in every doctor - even in pediatrics.  Some doctors just stick to doing the medical part and don't really think past that.  And what I mean is how hard this is on the patient - and the parents.  Not every doctor even acknowledges that part - these all did.  It really makes a difference.  It makes the hardship of traveling there worth it.

We got an Uber and went back to the Air B&B to pack up and let Harlie rest and relax a bit before our flight to Richmond (I think we took the 4pm flight).  When we got her inside I noticed she was breathing really hard.  I checked her sats and they were 63!  So, I put her on oxygen.  Her docs said that her lungs sounded great just before we left, so I was kind of surprised at the low number.  Usually low sats for her mean crappy lungs.  But, she's just been through a hard surgery and was pretty inactive for a week.

Going through the airport wasn't as bad as I was expecting.  The airport staff (at security) was really nice.  Although, they always check her wheelchair pretty thoroughly for explosives.  I couldn't help but wonder why a person would put their kid through that surgery (which was clearly visible to anyone) and then blow up a plane, but whatever.  I know they can't think like that.  I finally went and got TSA pre-check before this trip, so that does kinda help the process a bit.

Coincidentally, some of our friends were leaving Boston on the flight after ours, but they got there early, so we were able to see them for a few minutes.  That was nice - thanks, Rob and Kathleen!

The flight home was not even close to full, so that was good.  We have never needed her to be on so much oxygen during a flight.  I had to turn it up several times to maintain her sats in the 80s.  The higher the liter flow, the faster you go through the battery.  Unfortunately, we went through both batteries and it beeped from landing to the car where Tom could plug it in.  That never helps our stress level.

She got some cool gifts when she got home - pajamas, markers, Legos, etc. Here she is, despite feeling like crap, drawing rainbows.  That girl.

When we got home, we were both so tired.  We put her to bed, and we went to bed.  And she woke up crying several times during the night.  While in the hospital, she was on Tylenol and Motrin, alternating, around the clock.  We went to bed and skipped a dose.  That was not smart.  We just weren't thinking.  So, she got behind on her pain meds and we had to work all night to get her okay again.  Since then, I have set my alarm to for midnight and 4am to give her meds.  Usually I do the midnight one and Tom does the 4am one.

The other night, my alarm went off at midnight and I shut it off and then fell right back to sleep.  At 1am, she woke up crying in pain.  Ugh!  This is so hard!

The pin site cleaning seems like it is getting better.  It used to take several of us, but now one person can do it alone.  She doesn't like it - and lets you know it.  But, she doesn't need someone to hold her hands down anymore.

The turning of the screws is pretty brutal.  There's only one (thank goodness) that is particularly painful for her - and that is the front left one.  We have been turning the front two pins, one turn each, two times per day.  And on every third day, we turn all four pins once, and then the front two twice per day.  On the day we turn all four pins, I take pictures of Harlie - front, left and right and email them to her surgeon.

Her teeth appear to be more unaligned and it is like her jaw is shifting to the right.  It appears that the left side is advancing more than the right side.  So, he said to make two turns on each side in the morning and then at night, just turn the right side one time.  That is actually working better for us - as we don't have to turn that left side at night (that one is the more painful one so it is nice to not have to do that to her before bed).

I think if I remember correctly, in the PowerPoint presentation, our goal was a 12mm advancement.  Here is our log:

I took that picture on the 20th, so I could send it with her photos (so it is a day behind now).  We were really hoping we would be done with turning today.  But, in his response to my email yesterday, he wants us to continue, at least until we turn all four pins again (which is Monday).  I will say that turning them twice in the morning and only turning the right one in the evening works better.  I'm able to give her one less dose of Oxy that way, which is good.

Of course, last night, after I turned her right pin, she said, "We are done tomorrow and this nightmare will be over!" I just looked at her and then said, I'm sorry.  We have to keep on for a few more days.

I have whined a bit to her surgeon about how hard this has been/is and I have to give it to him - he acknowledges my feelings and is compassionate and empathetic.  Then he says, "keep going."  Okay, if we are going to do this, I want to do it best we can.

At this point, we are terrified this won't work.  I suppose we would've been anyway.  But, seeing her jaw go to one side has made us more afraid.  He assured us that is fine and fixable and doesn't indicate that we are not making good progress.  So, that is good.

The other night, maybe 3 or 4 nights ago, when I was putting her to bed, she said something to me.  I don't even remember what it was.  But, when she started to speak, she made a sound.  It sounded like her real voice - the voice we heard when she didn't have her trach.  It was only a split second of that sound.  But, I really don't think I made it up.  I really think I heard it.  And I am hoping that it means that more air is passing up through her vocal cords, which would mean that there's been enough advancement for there to be a difference in her airway.

It is really hard to confirm that right now because she is having an issue with her breathing right now.  I emailed her pulmonologist earlier in the week and he gave me an explanation that sounds right.  She's been on supplemental oxygen since her surgery.  But, her lungs sound good.  So, that's weird.  So, I reached out to him and gave him an update on what's going on right now.  He asked if she is in pain and are we managing that pain with opioids.  Yes to both questions.

He said that she probably has hypoventilation due to the opioids.  The treatment for hypoventilation is supplemental oxygen - so as long as I can do that - her pain management is more important.

So, until we are done turning the pins and she is more comfortable, I don't think we can test her airway out.  Until then, we hope like crazy that all of this is successful.  The thought that we could have done this for nothing is just too much.

I'll leave you (for now) with one last picture.  I took this photo a few nights ago.  I stopped and got her a bath pillow since she's been wanting to take relaxing baths lately.  It is crazy to see your child's face literally change before your eyes.  And for a brief moment, I thought, "we're going to be okay."

I say "we" because if she's okay, we are okay.  If she's not okay, then we are NOT okay.  My moments of comfort are fleeting, often refilled with fear very quickly.  But, with any luck, in time, the fear will be replaced with hope - even if it is moment by moment.

She doesn't even look like that picture anymore.  Her face appears more swollen and round again.  Yes, her face is changing each day, and it is not easy on this mom, I can tell you that.

I have so much more to say, but at least you're updated for now.  Also, one last thing - if you have reached out to me via text, email, etc. and I haven't responded -  I am sorry.  I find it so difficult to answer how we are doing with "crappy, really, really crappy."  But, I cannot lie and say we are fine.  So, I haven't responded at all. But, I can tell you that I appreciate you caring and I am feeling your support - even if you don't know it.  Thank you for the love!

Much love,
Christy xo

Day 5

Hi,

So, I suppose this is going to be a bit of a roller coaster.  Yesterday was way better than today.  Today has not been a good day.  And when Harlie doesn't talk - it is a really bad day.  And she's not talking.  Insert super sad face here.  I asked her why she didn't want to talk - I said is it your lungs, throat or face?  She pointed to her face.  I think she hurts too bad to talk. 

She didn't tolerate her wound care or turning of the screws well at all.  It was rough.  I turned the screws and her nurse did the wound care.  I just couldn't.  And I don't need the additional practice.  Today, I needed the break. 

Whew, honestly, I am having a really bad day.  I am feeling so mad. 

One of her cardiac scripts is requiring some extra effort to refill and I am having a hard time getting that done.  I've made calls and sent emails. I don't have the energy to explain why it is difficult - but please know that it shouldn't be.  Especially right now.  For crying out loud, I just want her stupid meds so that she has them.  I think there are too many docs in the kitchen.  Is that not how the saying goes?  Oh, well.  Things aren't normal in my world anyway.

And on occasion, I see snippets of the mass hysteria that is the Corona Virus.  And a shortage of toilet paper?  WTF is going on out there? I go away for one week and this happens?  And I have NO idea how much toilet paper is in my house!  Why the fuck is this a concern in my life right now?!?!

First of all, welcome to my world, people.  We live in fear of EVERY virus - because it doesn't matter what it is - it can put Harlie in the hospital - or worse.  That is our reality.  And that has been our reality for over 13 years.  You don't see me hoarding hand sanitizer and toilet paper and crying every day.  Nope, I just go about my life, washing my hands and trying to laugh despite the immense amount of CRAP cards that we've been dealt. 

Second of all, why toilet paper?!  This isn't a GI bug, people. 

So, I asked plastics if we have to keep cleaning her pin sites twice a day.  This is agony for her.  Maybe due to pain, maybe anxiety, maybe both.  Regardless, it is agony for both of us.  The answer was a solid yes.  I exclaimed DAMN IT! Then, I asked for how long.  Based on my reaction to her first answer, it was clear she didn't want to answer my second question. 

Sigh, we will do what we have to do.  And we will hate it.  But, we will do it. 

I'm not sure where plastics gets the feedback that kids tolerate jaw distraction without much pain.  That is clearly not my experience.  Of course, we have a kid who has had well over 60 surgeries, so maybe she is just clean out of tolerance for anything.  Me too, by the way.  I'm over this.  I'm over how hard life is.  I'm over hearing healthy people complain about temporary discomforts. 

The next time life feels difficult, try asking yourself this question... Is this a life changing event or is it a temporary discomfort?

Then react accordingly.  It has gotten me through some hard times. 

So, something positive...

Harlie got to pick out something from the Treasure Chest yesterday.  She picked this building thing.  Apparently the instructions weren't as clear as Harlie needed.  She struggled for a little while. 

Then she got her tablet and typed the name of the toy into You Tube.  She found a video and then built this cute car.  I love it when she shows me how smart she is. 

Tom just got here.  Thank God.  He makes everything better. 

Another positive thing... Harlie was trying to tell Tom something she wanted to do with the car she built.  She was struggling (since she's not talking).  So, she went to her tablet and pulled up the sand app (I haven't seen her open that app in ages - it is for drawing in the sand) and then drew what she wanted to do. 

It is a ramp, showing that she wanted to make the car jump from her bedside table to my table.

Damn, I love that little problem solver. 

She got to open a few more people today.  There are three left to open.  We'll save those for after tomorrow's pin turning and cleaning.  They look so cute on her wall. 

Oh, the CT scan was good, so we are planning on taking her home tomorrow.  While I'm certainly glad to leave the hospital, I can't help but feel a bit nervous taking her so far away from her doctors.  Hopefully, we won't have any issues. 

Okay, that's it for today.  I need to go turn her screws and then Tom and I are going to dinner. 

Thanks for everything!

Much love,
Christy xo

Jaw Distraction Post-Op Day 4

Wow! Today was a much better day. 

Harlie's pain is more controlled.  And they told me that they will send us home with some Oxy, so that's not an issue. 

Last night she had some beats (8 or 9 I think is what they said) of ventricular tachycardia. I don't think I remember that ever being an issue.  So, they interrogated her pacemaker and said they are going to send an email to her doc in DC to let them know.  And I need to follow up with that when we go home.  Hopefully there won't be anymore issues with that, because I just googled it.  No thanks! We are full of issues right now - not accepting anymore at this time. 

I turned the screws this morning and that went okay.  She isn't exactly cooperative, but it was doable with someone to help hold her arms/hands down.  And I cleaned all of her wounds.  They are still oozing a little, but looking okay for the most part. 

Her plastic surgeon came to see her today.  He turned the other two screws for me. I was a bit nervous since they haven't been turned at all.  I was a little worried they would be harder to turn and that I would hurt her really bad.  He said they turned fine.  But, I don't have to turn them again until he tells me to.  He wants to see a CT scan before she goes, just to make sure everything looks good.

So, we are really close to being able to go home!  Woohoo!  I do think she will be so much happier at home.  Although, her nurses are doing a really good job spoiling her here. 

She got her CT scan at around 5:30 or 6pm tonight. 

Then she came back to the room and wanted to draw. 

And she has smiled a few times today. 

She is really not happy about the constant drooling.  She cannot close her mouth (and her lips don't touch).  But, if they get the growth they want, that will be much easier when all this is done. 

Her home bound teacher, Ms. Wead, made Harlie a bunch of "people" for Harlie.  Each one is individually wrapped and she gets to open a few after she has to do stuff she doesn't like.  They are so cute!  She loves opening them to see who is in there. 

She hasn't said anything negative today.  She is definitely getting back to her good-natured, easygoing, fun-loving self. 

Ugh, I just turned the screws again and she is not happy anymore.  I hate doing that to her.  Her nurse is going to give her some meds, clean her wounds and then let her go to sleep for the night. 

Tom is going to fly back up tomorrow and we are going to get everything ready to take her home on Thursday.  Her surgeon still has to look at the CT scan and give his okay for us to go.  But, I assume that will happen tomorrow just fine.  Hopefully all looks good on that scan! 

My mood is so much better now that Harlie is more herself.  I was really feeling defeated there for a few days.  It is very hard to watch her go through so much.  And each surgery/hospitalization just builds on the last.  We go in heavier - and with more memories - each time.  So, thank you for all the kind words of love and support.  I promise you - they help me get through. 

Much love,
Christy xo

Jaw Distraction Post-Op Day 3

Hi,

I am going to try and be quick tonight.  It is already 9:30pm and I'm just sitting down to write. 

Overall, today (Monday) was better than yesterday.  The smaller dose of Ativan was better.  She definitely talked more.  And she complained more.  But, that's okay.  Definitely better than not saying anything at all. 

Tom left this morning.  It is always hard to see him go. 

That was the first smile we've gotten out of her. 

After he left her nurse and I got Harlie up and in the shower.  She was miserable and hated every second of it.  She saw herself in the mirror in the bathroom and she said, "I am so ugly." 

Ugh. 

Of course I told her she wasn't.  I told her I know you feel terrible and feel like you look terrible.  But, it is temporary!  You won't look like this - or feel like this - forever.  But, to her, two months feels like forever.  And this sucks today.  And it will suck tomorrow.  And the day after that.  I make sure that I let her know that she isn't wrong to feel whatever she feels. And then I tell her I love her and that I'm sorry - but we will get through this.  And one day, it will be over.

With any hope, the worst is behind us.  Hopefully, each day will get better from here on out.  So, it won't suck THIS bad for two months.  Maybe that's something. 

After her shower, I cleaned all of her wounds and changed her trach ties.  And I brushed her hair and braided it. Her nurse found some pjs for her to wear instead of a gown.  I told her I really didn't want to put a shirt over her head.  She left and came back a few minutes later with this solution:

How good is she?!?!  She cut the shirt and that added ties to the back.  I was impressed - and thankful.

Then her nurse asked her if she wanted to go to the play room.  I was shocked that she said yes.  And she walked most of the way there, which is really good!  And they played air hockey. 

After all that, we came back to the room and Harlie wanted to sit on the couch with me.  She got to pick out a toy from a toy chest (she picked a puzzle) and wanted to do it next to me.  Child Life brought a table for me to do puzzles earlier in the morning. 

Once we sat down, Harlie said she was feeling happier.  That didn't last long.  But, at least it is a start.  This is really a tough one for her.

Speaking of tables, I forgot to tell you something funny that happened in the CICU.  Harlie asked for a bedside table.  I don't know who the girl was (I'm assuming she was new?) but when she brought the bedside table, I told her thank you.  Then she said, "No problem! You just press here to make it go up and down." 

It took ALL of my strength not to laugh out loud at her.  Wow, she thought I didn't know how to adjust that table.  Do I look new here?  I mean, one quick look at Harlie should clue you in that this isn't our first time the hospital.  I keep seeing her innocent face showing me how to adjust that table, and I just laugh.  So funny! 

Anyway, at one point, Harlie asked for some arts and crafts stuff.  So, I went down to the gift shop and reluctantly bought her a pen/sketch pad set.  It was more than I wanted to spend and I knew damn well she wasn't going to play with it.  I also grabbed her some Plus Plus blocks (?).

When I walked in the room and gave them to her, she said, "Got anything else?"  Tough crowd. 

But, she played with both more than I thought she would.  And I fully expected to see some kind of dark drawings in the sketch book.  She was pretty mad today and said several times that she was ugly.  When I looked in the book, she had drawn three pages of rainbows.  RAINBOWS! I gotta tell you, I'm not feeling rainbows. 

That girl is something.

Plastics came by early evening and asked me if I wanted to start to turn the screws.  Oh boy.  I suppose I have to do it eventually.  So, I did.  He had to hold her hands down.  But, I turned them okay.  He said that they are comfortable with whatever we are comfortable with as far as taking her home. 

So, our goals are to get her on a pain regimen that works for her and that we can comfortably manage out of the hospital.  She is still getting Oxy, and her nurse doesn't think she can have that after discharge.  So, I think they will want her to go more than 24 hours without it. 

I'm hopeful we will be able to be home before the weekend. 

So far, I am really happy with all of her care.  Her doctors, her nurses, etc. have all been really compassionate and good to her.  And to me, too, actually. 

So, aside from the fact that my beloved daughter hates the way she looks and feels, I guess today was an okay day. 

Thanks for all the love and support.  I just can't say that enough. 

Much love,
Christy xo

Jaw Distraction Post Op Day 2

I had a rough time getting up this morning.  Tom offered to go to the hospital and let me stay in to sleep a bit more.  So, I got to move more slowly, which was really nice.  I forgot to mention that when Tom went to go get a better bottle of wine the other night, he returned with some flowers, too.

So, I got to drink my coffee, listen to some music and look at some pretty flowers before I got ready to go to the hospital.  I really felt daylight savings this morning. 

Anyway, how's Harlie?  Well, she's a different girl today.  She has hardly spoken a word. In fact, she has only answered questions with one word answers.  Sometimes, she doesn't even answer at all. No complaining - at all.  She's not even itchy. 

Ain't that something?  This feels worse than her complaining all day!  At least she had her personality.  I asked her how she was feeling and she slowly put her hand to her trach and whispered, tired. 

Tom said that they wanted her to sit in the chair for a little bit.  She protested, but then gave up.  Then she fell asleep. 

She's been pretty much sleeping all day.  I don't think she had a great night last night.  Her nurse said she woke up a lot throughout the night. 

Her blood pressures have been high (she normally runs low).  They were going to increase one of her meds for this, but gave her Ativan for anxiety and her blood pressures came down. 

So, I don't know if she's quiet because of the Ativan or what.  I can tell you she is NOT like herself at all.  If she were like this at home, I would say she's coming down with something.  But, again, we aren't familiar with Ativan.  They are going to decrease her next dose to see if that helps. 

She could also be mad at us.  Or really sad.  Or both.  Ugh. Our poor girl.  This is so hard!

They are sending her to the floor today.  I'm trying hard not to stress out about this.  Typically, when the floor is mentioned, I start arguing to take her home.  At home she can get one on one nursing - totally not the case on the floor.  But, I can't really think about taking her home yet.  She is definitely not ready.  And plastics hasn't even released her yet. 

Plus, when we leave, I need to get her to the airport, on a plane, then home.  That can be tiring for healthy people.  Plus, going through the airport and getting on the plane is going to be hard emotionally.  We get stared at on a good day. 

I remember when we left Boston Children's after her last distraction surgery in 2013.  A girl standing in line with her parents in front of us started crying as she stared at Harlie.  I get it.  It isn't every day you see a girl with this kind of head gear (plus the trach, wheelchair, good lookin' parents, etc.).  Haha! We're going to look like celebrities gone wrong walking through the airport.  Oh, grant me strength!  And please let people be kind! 

So, thinking ahead, I thought I should start to get used to taking care of her and all her stuff.  Plus, I was hoping that me cleaning her wounds would make her more comfortable.  I have to clean her trach wound all the time at home, and she is really good for me when I do it.  So, her nurse let me take the lead.  It was not fun.  I wouldn't say she was good with it - but she was better than yesterday. 

So, it looks like she is being moved to the cardiac floor around 6pm tonight.  Now I just pray that she gets a private room.  After spending years of our lives in the hospital, I think we should have some kind of pass that grants us only private rooms from here on out.  Honestly, every hospital should get rid of shared rooms anyway. 

Whew! She got a private room!  Her nurses just said that it is a nice room, too.  So, she will get moved soon. 

She is settled in her room now.  And it is a nicer, quieter place to hang out.  There's even a small fridge in there! And we have our own bathroom, with a shower.  One of her nurses today said she remembered her from two years ago. 

Tom went to dinner with Mike (he leaves to go back to Pittsburgh tonight) while I stayed with Harlie to get her settled.  Her nurses took out one of her IVs (it stopped working) and she wasn't happy about that.  Her nurse tried to distract her by asking her what her favorite movie was.  I had to coax her to try and answer.  When she did, it wasn't anything understandable.  Then she signed "Where's Daddy?"  So weird.  She hasn't signed that in years.  She has NO energy to speak at all.

I'm really hoping that tomorrow will be a much better day with that Ativan out of her system a little.  They are going to cut her dose in half tomorrow.  Plastics came by to turn her screws again.  She handled that pretty well, all things considered.  Maybe she was too tired to fight.  I took this picture before he came tonight, but here is her chart. 

So, we have a ways to go. 

She is really, really miserable.  I just keep telling her that each day will get better.  And one day, all of this will be behind her.  But, oh boy, today sucks so bad...

Her night nurse came in and I asked her how many patients she has and she said just two.  Whoa!  That is awesome.  And she said she's an ICU nurse and is floating to the floor tonight.  What luck!  So, she told us to go back to the apartment tonight and get some rest.  Tom is flying home tomorrow.  And he will come back next weekend (or earlier if need be). 

Well, that's all I have for today..  Thank you for all the love!

Much love,
Christy xo

Jaw Distraction Post Op Day 1

Hi,

Well, things are going okay so far, I guess. 

Yesterday, Dr. Resnick found us in the waiting room and told us that everything went as planned.  That means that he was able to put everything where he wanted it, which is a really good start.  He said that her skin is stretched really tight on her right side.  I think he said the metal is a little bulky under her skin, especially on the right.  But, I can't see that yet.  Maybe because she is a little swollen or just that there is a lot going on.   

They already came this morning to turn the screws.  There are four of them.  Two closer to her chin, and two closer to her ears.  They are only turning the ones closer to her chin for now.  They get one full turn, twice per day.  They will turn them for us until we are ready to leave the hospital, then we take over.  Here is the tool they use:

Back to yesterday, I can't remember if I mentioned that an ENT (up here they call them ORL for otolaryngology) came to scope her and change her trach at the beginning of the procedure.  We were told that when she scoped through her trach that her sats dropped surprisingly fast.  Not that big of deal in that situation, as they were uber prepared and she was healthy at the time and bounced right back when the scope came out. 

It just further proves that she has no airway if something were to go wrong with her trach.  I've been asked many times why we are doing this surgery.  And this is why.  Now we just hope that this works.

Also, while we were sitting in the waiting area, Dr. Mancuso came by.  He was the doctor that decided to send her to the OR for re-intubation (vs. attempting to do it bedside) two and half years ago.  That decision was life saving, for sure.  He said he will never forget that night, either.  He is such a great person and it was so nice of him to come find us to say hello. 

She stayed asleep most of the day.  I forgot to mention in my last post that in pre-op yesterday she said she was going to take a looooong nap.  Haha!  And that she did! 

The CICU asks that parents not come and go between 6:30-7:30, as that is when they have shift change and give report.  They don't want to be distracted during report.  Tom left earlier to walk some things back to the apartment.  And our friend Mike Cherock just happens to be in Boston for a few days (he lives in Pittsburgh).  So, he and Tom went for a drink.  At about 6:30, I left to meet them for dinner.  I tried to wake her up a bit before I left.  But, she wanted no parts of it and I didn't want to make her mad.  I would want to sleep through as much of this if I were her.  So, I held her hand and talked to her anyway.  I was hoping that she would hear some of it and know that I was there. 

I ubered to the restaurant because it was dark and very cold, and I just didn't feel like freezing. I just didn't have that kind of energy.  It was really nice to be able to see Mike and feel like ourselves again. 

Later that night, Harlie's nurse called me to ask a few questions.  She said that Harlie woke up and she asked for a mirror.  I said, "You could understand her?"  And she said she was talking a lot, actually and that she could understand her.  That was both surprising (because of the distraction device) and not surprising (her personality) at the same time.  And I was thrilled that communication won't be much of an issue. 

She said she cried a little when she saw herself in the mirror and when they changed her dressings.  But, that she was doing well, all things considered.  She asked me something about suctioning, and I said, "Oh, don't be surprised if she yanks the catheter out of your hand and suctions herself."  And she said, "Yes, she's already done that.  She's very good at telling me how she likes things done."  Haha! Then she said, "I love her."  While I felt terrible that we weren't with her when she woke up, I was relieved to know that she can handle her own when we aren't there. 

We had a better night's sleep last night - but I had several dreams about her recovery again.  This is really odd because I rarely remember my dreams.  One of my dreams was that I took her shirt off over her head and it got caught on one of the metal screws and caused her a lot of pain.  Again, all I could tell her was that I was so sorry, over and over again.  Clearly, I'm really sorry that she has to go through all this.  And I'm probably pretty nervous about taking care of all of this new stuff.  I just don't want to hurt her. 

Anyway, here is how she looked immediately post-op on Friday night:

And this is how she looks today.

Post-Op Day 1

Honestly, I don't think the pictures do it justice.  There are so many areas where her skin had to be cut open, or where metal is poking through.  There's metal outside and inside her skin.  And her skin is stretched so tight.  So far, she has complained about pain a lot.  Like all day. She told her nurse last night during her dressing changes that this was a nightmare.  Ugh.  She said this morning that she looks terrible and that she will never be happy again.  Of course we told her she will be happy again - in a few days or weeks.  She will get used to all this in time.  And so will we.  Then, in eight weeks, it will be gone.  And, please dear God let her have a better airway. 

They just rounded and they said they are not used to handling cases like hers.  This is a cardiac ICU, of course, so they don't normally get a lot of plastic surgery cases.  I love it when they are honest with me.  And I really love it when they are especially compassionate.  They really want to make sure that she's not in too much pain.  It is difficult because plastics probably doesn't have a lot of patients with her crazy history and medication tolerance.  And cardiac doesn't have kids who have this kind of surgery.  So, they are going to work together to figure out a good balance.  Her nurse told the docs that the meds they gave her last night (Morphine and Versed) didn't touch her. 

Ugh - this is definitely the most we have ever heard her complain.  She really is miserable.  Plus, she's on a bunch of pain meds and I think they are making her a little hypersensitive to silly things.  Like she kept on saying, "something is touching my ear" and it was the little foam dressing.  Odd that there are way worse areas of pain, but that she was obviously particularly annoyed by that.  Same with a bandage they put on her lower back (I guess they are trying to prevent a re-occurrence of her sacral ulcer?) She is so annoyed by it that it is hard for her to get past it.  Earlier she said this...

Harlie:  My heart hurts when I cough. 
Me:  What? (said with a confused look on my face)
Harlie:  Its a new thing. 

Despite her miserableness, she is still so funny. 

She got up into a chair today.  Look how happy it made her!

I tried to brush her hair.  That didn't go over so well.  They tried to wash most of the blood out of it yesterday, but it still smells like blood really bad.  If you don't know what blood smells like, you should consider yourself lucky. 

Now she's saying, itchy.  I'm itchy.  ITCHY!!! 

Oh, I don't know who is more miserable - her or me!  Haha!  I shouldn't joke - but oh Lord, if I don't, I'll cry.  This is what I'm hearing right now:

So ITCHY!  Make it stop!  

Oh, my chin.  

I can't stop drooling.  

How long do I have to have this?

When can we take the band-aids off?

ITCHY!

And to make things even worse - she can't wear her headphones.  Oh, the humanity!!!  So, we get to hear My Little Pony, Spongebob, Scooby Doo or whatever the heck she is watching at an insanely loud level.  And literally, she watched 5 minutes of each of those shows - fast fowarding periodically, so nothing they say makes any freaking sense.  So, it's just noise.  I think maybe Oxycodone is causing some of this... At least I hope that's the case, since she won't be on that for long (I hope).

And she can't wear her earrings.  I swear, this girl never has it easy.  Maybe after the initial hump and when pain is controlled, I can try to put them in.  There is just so little room between her ear lobes and the metal rods - especially on her left side.  Even though she has had her ears pierced for over two years, I wouldn't be surprised if they closed up.  If they do, I'll have them re-pierce them when they go in to remove the hardware in May.  That's already been scheduled - May 12th.  We'll have to do some "fun" count down thing for her. 

Honestly, for the most part, we are pleased with how she is doing medical-wise.  Her lungs appear to be good.   Her wounds are still oozing, but appear to be okay.  And she definitely has some spunk.  The biggest problem is pain management.  And it is getting worse throughout the day.   

When is this nightmare going to be over? Moaning...

My head hurts. Moaning...

I hate this. More moaning...

Her nurse went and talked to the team about her pain.  They are going to give her some anxiety meds, too.  And they are going to add something through her IV. 

I will be really glad when we have a week or two behind us. 

5:30pm - So, they just gave her a bunch of meds and then they changed the dressings, cleaned her incisions and changed her trach ties.  That took more than 30 minutes.  That is such a long time to be doing that.  But, she is less than cooperative and her kicking and moving the whole time makes it take way longer.  She is wiped out now and has taken off her hearing aids, put her sleep mask on and is trying to shut out the world. 

How much you want to bet that plastics will be here in the next 30 minutes to turn the screws?   

Well, I'm going to sign off for tonight.  Thank you for all the love, truly.  We appreciate every single comment and sentiment of support. 

Much love,
Christy xo

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