Surgery Day and Post-Op Day 1

 Hi,

Thank you for all the kind messages, love and support!  Y'all are the best!  

Yesterday, we had to be at the hospital at 6am.  It is still pretty chilly in Boston, so we thought about getting an Uber to the hospital, but ultimately decided just to walk.  It is exactly one mile, and the walk does us well.  I asked Harlie if she had any questions about the surgery and she said no.  I struggle with how much to tell her prior to a surgery.  I don't want her to worry about it too much.  She knew it was surgery on her jaw.  And she asked how long the metal would be there.  I said, forever.  Then she said, "You've got to be kidding me."  Haha!  It was awesome to be able to tell her that there will be no metal that she can see.  All of it will be under her skin. That was horrible for her last time.  But the good thing was that this surgery seemed less horrible in comparison.  

Getting all ready for the OR...

Amy Vinson is her anesthesiologist and we love her.  She actually rearranged her work schedule this week so she could be on Harlie's case.  How awesome is that?!  And she gave me an awesome question to ask the next anesthesia pre-op person I get.  It makes me laugh every time I think about it.  I hope they have a good sense of humor! 

They took her back to the OR right on time and we went to go get some breakfast. They assign you to a pod in the waiting room and we went there and hung out for the rest of the day.  We watched Netflix on my laptop.  They call every 1.5 hours or so to give us an update on what's going on in the OR.  Honestly, I don't need those updates.  Haha!  It is kinda gruesome to think about the details of what is actually happening in there (he's cutting the right side now), so I'd really rather not know.  

At some point, I posted this pic (waiting in our pod) on Facebook and my friend, Laura, had some fun with it.

She shared this one...

Then this one...

And then she outdid herself with this one...

Hahahaha!  It has made me laugh out loud every time I have looked at it!  The edit to Tom's shirt is the best!  It is even funnier because Tom does NOT 💗 NYC.  Hahaha!  So, thank you, Laura!  Seriously, you made our day so much funnier!  I'm laughing as I'm typing this and Tom just asked in an irritated way, "What are you giggling about?"  I said, "These pictures."  And then he said, "Well, it is annoying."  Nice.  Honeymoon's over, people.  

Anyway, Dr. Resnick came out sometime around 2:30ish, and told us that the custom joints went in great.  He looked pretty hopeful.  He said he was able to really pull her jaw forward and get it in a much better position.  The only concern he has is about her skin.  He said it is really tight, stretched out in this new position.  So, we'll see how that goes.  He also said she has a loose tooth on the bottom front.  Those are her permanent teeth, so this really bothers me. I'll go into more detail about that in a minute.  There's more to that story.  

He also said that Dr. Vinson was curious to see the difference in her airway after pulling her jaw forward.  So, when he was done, she wanted to scope a little, to see how it looked.  He said she was still in the OR and they would let us know when she was done and Harlie was ready to go upstairs to the CICU.  

I try to make jokes when I can (and probably when I shouldn't), but the reality is that this is really, really hard.  It hurts my stomach to hear and think about the details of what he actually had to do during surgery.  The cutting of her jaw bone, the screwing and attaching and stretching, etc. And it isn't just THIS surgery.  It is all of them.  They are all so brutal. It just makes me so sad for her.  And even though I believe our end goal is so important (an airway for crying out loud - I mean, it seems like that shouldn't be asking too much) I still worry that it is asking too much.  And, then I start to think about the reality of recovery and how hard that is on all of us.  Ugh.  It really brings me down.  It isn't like we are starting fresh for each surgery.  Every time we go in to the hospital, I am carrying all the past hospitalizations with me.  It just gets heavier and heavier each time. 

The waiting room liaison called into the OR and they said it would be a while before they would send her up to the CICU. So, Tom made me go outside and walk to a restaurant for a quick beer and snack.  

He knows me so well.  And it is good to have a change of scenery and get some fresh air.  While all that heavy stuff is still there, we can't focus on it for too long.  We have to rise above it and appreciate the good.  And yesterday afternoon the sun was out and it wasn't freezing and the beer tasted good.  And I just have to go back and look at those photoshopped pics and then I laugh out loud again.  

Dr. Vinson texted me and asked where we were.  I told her we were drinking a beer.  Haha!  She said she had some stuff to do, so she said she would meet us in the lobby in a bit.  So, we finished up and headed back to talk to her.  

First, I LOVE that she was curious about Harlie's airway improvement and wanted to see for herself right then!  It is clear she's invested and really cares!  And, it kinda makes me feel supported in our decisions to keep fighting for this airway.  

Anyway, she said she saw more than she's seen before (can't remember the parts she named that she saw).  She said she could've gone farther, but she didn't want to push her luck and she didn't want to disturb that loose tooth.  So, she stopped.  Regardless, I think what she was able to see and do is already a really good sign!  After talking with her, we headed up to Harlie's room.  

Honestly, she looked better than I was expecting.  She did lose some blood during the surgery, so they gave her more.  That is a drain line you see in the photo.  

Okay, back to her teeth... 

Back in August 2017 (you can read about it here) when she had her Ankyloses release surgery (her jaw and base of her skull fused together, and cutting that apart is what brought her to needing that emergency trach) as part of that whole procedure, they had to remove a bunch of teeth.  Some were deep in her bone, laying sideways and were never going to erupt.  The removal of those teeth basically disrupted the support for the teeth that had come in.  And within a few days she lost more teeth - including some permanent ones.  Something about her losing her permanent teeth at 11 years old really bothered me.  I mean, c'mon - can't the girl just keep her freaking teeth?  WTH?  Just to put it in perspective, these are the teeth I'm talking about...

So, after I let her doctors know how upsetting that was to me, they put a splint on her bottom, front teeth to stabilize them.  The splint looked like braces.  And they stayed there from August of 2017 till March 2021.  It was very hard for her to brush those bottom teeth and after so long, it seemed like it would be okay to finally remove the splint, which was put in as a temporary measure to allow them time to heal and harden in place.  So, after her surgery in May 2020, I asked them if we could remove them.  They said yes. 

It took a while to get it scheduled - should her orthodontist do it or her dentist?  Luckily, they know each other and spoke about it.  Her dentist said she wanted to do it so she could clean those teeth right after removing the splint.  But, nothing is ever easy for Harlie.  First, an orthodontist didn't put on the splint/braces.  And the material they used was different - it was thicker wire, braided and they put a lot of composite on there - they wanted it to be really strong.  So, after over an hour, she had to stop.  The air thing they use to remove the composite material was tearing up her gums/lips and she was really struggling.  When big tears started coming down Harlie's cheeks - while she was still being so cooperative - her dentist said she just couldn't put her through any more at that time.  So, we scheduled another time to pick up where she left off.  Then that day we had a snow storm, so her appointment was cancelled.  We rescheduled again (March), and her dentist was able to remove it (Hallelujah!)  and clean her teeth.  

Now Dr. Resnick said that at least one permanent tooth is loose again.  Ugh!  That splint came off less than a month ago! So, they are going to have to put another splint on them.   But he doesn't want that to happen right now.  She needs to heal a little bit more.  Then we are probably going to have to figure out a more permanent solution.  It is stuff like this that wears me out. Well, that's stupid.  All of it wears me out.  But, these "little" things are never little - and they usually involve a lot of appointments and work. Hopefully she won't lose it before they can get another splint on. 

Anyway, after spending some time in her room (Harlie slept the whole time) and with her nurse, answering questions, etc. we left to go get dinner.  

It is now 6pm on Post-Op Day 1.  I have been working on this post all day (with lots of interruptions and one small nap - don't judge, haha).  

Today has been okay.  As soon as we got in this morning, she signed that she hurt.  She really didn't even need to sign it - we could tell just by looking at her.  Poor thing!  It kills us to see her in so much pain.  She's on a bunch of stuff through her IV, so that's good.  But, a kiddo who has had as many surgeries as she has had - builds up quite a tolerance to meds.  And they always have to give her more than you'd think to help her.  That's where being in the cardiac ICU really helps - they get that.  

She asked for her tablet (she's having a hard time speaking right now, but she gets her feelings across anyway) and immediately put it on selfie mode so she could see what she looks like.  That is always so hard to see.  We just keep reminding her that it is only temporary and each day will be better than the one before.  And that we love her and we are here with her.  

Her face isn't as swollen as it has been in the past.  But, it is more bruised.  You can see the bruising under her eyes and down her cheeks.  

ENT came by and changed her trach.  They put in a cuffed trach for the surgery since she has to go on a ventilator.  And then they change it back to an uncuffed trach the day after.  The manipulating of the trach ties seemed to hurt her (the incisions are right there).  Plus, she has that drain line in her neck, so all the movement was hurting her.  They also looked in her ear (she was communicating that her ear hurt) and it was bleeding some.  He said that the temporomandibular wall is shared with her ear, so any manipulation can cause her ear to bleed.  It can also cause shifting, and sometimes they have to put something in the ear canal to keep it open.  But, he said he didn't think that was necessary, so that's good.  The negative with any ear issues is that she can't wear her hearing aid.  So, that's a bummer.  

Since she was up and already bothered, her nurse pulled her Foley catheter.  And she took out her arterial line.  After all that, she wanted to sleep.    

 

Harlie prefers her sleep masks, so I brought a couple...

Since she was sleeping soundly, we went and got lunch.  When we got back I was so tired.  There is something about a hospital room (the hum of the equipment maybe?) that makes it so easy to fall asleep.  So I took a little nap.  

Harlie slept for a few hours, so that's good.  

Overall, today has been okay.  Once you get Harlie's pain under control, she really seems okay.  I mean, she's not happy.  But, she's not mad.  I asked her if she was mad at me earlier - because her expression told me she was mad.  But she shook her head no.  I think she just can't really change her expression right now.  She tried to drink some water, but that was really difficult since she couldn't really move her lips or anything.  Poor thing.  

Okay, I'm going to wrap this up now.  I'm going to include a pic of her drain line, for those of you that are curious.  I'll just add it at the bottom.  

Thank you for all the love!

Christy xo

Post-op and surgical update from surgeons

It is now Saturday morning and overall, Harlie is doing well.  She looks better than I expected, so that's a pleasant surprise.

I'm having a hard time organizing my thoughts....  let me just go back to last night.  We were able to see her around 7ish last night.  Before that the surgeons came to talk to us about how the surgery went.  I wish I could have written this last night, when all the information was fresh and clear.  But, I was way too tired to do that.

Here's what I remember:

She did well through the surgery (heart and lung-wise).

Her jaw was not stable the way it was.  The previous bone graft on her right side was only connected to her own bone by scar tissue.  Her oral surgeon said that they had to just remove it and start over.

They ended up having to make an incision from one side of her jaw to the other.  The left side of her jaw had something that was preventing them from aligning her jaw - I can't remember - but it was like scar tissue or ligaments or something.  Step one in the surgery was for the oral surgeon to line her teeth up in the desired position - then they put the bone graft in the voided space.  But, when the oral surgeon went to align her teeth, her jaw just didn't move they way they needed to.  So, that's why they had to make a larger incision than planned.

The micro surgeon was going to revise her scar on the right side from the previous bone graft (it was pretty rough) but he said that they pulled her jaw out so far that her skin is really stretched - so there wasn't enough skin available to do it now.  She will have to have several more surgeries - so it's not a big deal.  There will be plenty of opportunities in the future (way to be positive, right?!).

They used screws to attach the bone graft.  Her oral surgeon said that they often end up poking out after a while (that happened after both of her previous grafts).  So, that might happen again and can be fixed during another surgery.

Her micro surgeon said that they didn't really attach the bone at the joint.  They want that to move so she can open her mouth.  Basically they had to create a new TMJ (temporomandibular joint).  And a risk is that the bone will grow over and prevent her jaw from opening.  So, they will want her to open her mouth often to keep everything moving.

Since her skin was pulled so far forward, he said that she would probably have a hard time getting her lips together.

Her teeth were a mess - as in the way they were trying to grow.  She had so little bone that they were coming in in all directions.  The left bottom teeth are growing to the left instead of to the top like normal.  I think he said the bottom teeth on the right are growing to the right side instead of the top.  And there was a tooth in the bottom front that was growing sideways as well.  So, they removed that one.  He said that this surgery should help give the orthodontist a base on which to work in the future.  I think she'll be lucky if she has any of her own teeth when she gets older.

We have no idea when we're going to know if this surgery was a success as far as decannulation goes (being able to get the trach out).  While that was our ultimate goal, it sounds like all of this was necessary regardless and that decannulation will be a bonus, really.  It's just way too early to tell and there's a lot of healing that needs to happen - and time that needs to pass - before we can see any results.  But there's a lot of hope in all of us - and we are choosing to continue to think positively.

Her left eye closure went well.  I'm anxious to see how she's going to look after all the swelling goes down.  I suppose that goes without saying, huh?

Her leg graft went fine.  She's in a hard splint now.  But she will be casted in a few days and will remain in a cast for a few weeks.  It will be up to her to tell us when she's ready to weight bear and start walking again.

That's all I can remember for now.  I am having a hard time trying NOT to worry about her future when it comes to her jaw and how it's going to function and look in the long term.  It just sounds like it was/is a mess.  Will she ever be able to eat a chocolate chip cookie?  Not that oral eating is everything in life - but it just makes me sad to think of a life without it.

After they got her settled, we were allowed to see her.

Immediately post-op.

How cute is her little leg in a splint?
It will be casted in few days.

Lots of suctioning post-op.
I had to help the nurse because she was already pretty feisty.

Overall, I think she looks pretty good.  But no matter what - it is very difficult to see your child's face change like that.  And it's difficult to wait through the swelling and healing to see her again.  Once I see her laughing again, my worries of the future will go to the back of my mind and her current happiness will keep me in the present.

After she was settled in for the night, Tom and I left the hospital and walked the mile back towards the hotel.  We were so freaking tired!!!  It was such a long day and it didn't hit me until I could relax a little.  We stopped to eat a late dinner at a Thai place right around the corner from the hotel.

Yesterday Harlie received a package from the Life is Good corporate office (which is based here).  Thanks to Lynda Reider (aka We Heart Harlie on FB) they were made aware of Harlie's surgery and they sent over an awesome care package for her.

There's a backpack, t-shirt, hoodie, coloring book, socks and a stuffed dog.  The most touching was the fact that the employees signed the card with sweet messages of strength and good vibes.  Seriously???  How awesome is that?!!

I have always loved Life is Good and the message of optimism... this is my Life is Good hat from my last trip here...

Powered by Optimism

But now I love them even MORE!

And I just can't begin to thank you for all your comments, prayers, messages, texts, and pictures of We Heart Harlie support.  It has been so overwhelming to see and feel the love!!  Thank you!!!

I have a ton more to write, but will get this done for now.  I'll work on what's going on today, and provide new pics in a little bit.  But, at least this will get you some info until I can finish the next update.

More soon!
~Christy xoxo

Post-Op Day 1 - 2nd Update

I wrote the following yesterday (Tuesday) but never was able to finish it.  I'll provide a new update as soon as I can...

Guess what?  She lost ANOTHER tooth!!!  Her nurse was getting her all cleaned up - trach and mouth - and used a sponge thing attached to a suction.  She brushed her teeth with the spongy thing and when she pulled it out I saw something white on it.  A tooth.  Another bottom tooth that must have been knocked loose yesterday.  Grrrrr.....  Her nurse looked at me so sympathetically and said she was sorry.  But it was not her fault.  And, quite frankly, I'm glad she got it out instead of it staying in there loose and Harlie swallowing it or aspirating it.  Wouldn't that be something?  Talk about adding insult to injury!!!

So, that's three teeth this stay so far, and one tooth from last year.  Four of her baby teeth lost due to trauma.  Nice.  You can bet your butt I'll be looking into a mouth guard for her.  

That just proves that no matter what - when you have a medically complex kid - you never know what's going to happen.  And that's why every stay is stressful and scary.  Not that loosing teeth is life-threatening or anything, but I never, in a million years, would have thought that would have happened during this surgery.  

Anyway, her two IVs stopped working today.  So, they had to get another IV in before they could take out the central line in her neck.  She hates all the stuff wrapped around her hands and arms.  And that makes it so difficult for her to sign.  So, I asked them to try to get it in her feet.  They didn't want to do that just in case they want her to stand at some point in the next few days.  So, they got one in her shin/calf area, on the inside of her left lower leg.  

They won't pull her arterial line (in her right wrist) until her blood work comes back normal.  Which I hope happens soon because she HATES it and wants it off as soon as possible.

That's all I got written yesterday - so now I'll try to update you on what's happened since then.  And it's a lot.

Thanks,
Christy

Recovery Update #1

Okay, just want to let you know that I am no longer pissed.  Sorry for that outburst in my last post.  As it turns out the two teeth she lost are on the bottom.  Whew!  I know it sounds completely ridiculous that I would stress so much and get so upset over baby teeth.  But here's why...

1.  It's always the little things that push me over the edge (momentarily anyway).  I always recover.  So far, anyway.  Perhaps it provides a distraction from the much larger, much more important issues that are hanging above like big scary, black clouds.  Any shrinks read my blog?  I could probably use some analyzing.

2.  Quite frankly, she's already got more than her fair share of facial and dental issues.  The last thing she needs is more issues with her mouth and teeth to distract from her beautifulness.

3.  Do we have to fear losing teeth for all future procedures?  Geez.  And what will we do when they are her permanent teeth?  I'm going to have to find an orthodontist to make her a mouth guard for crying out loud.

4.  And the way she lost these particular two teeth (just in case you didn't know - she lost a front tooth last February after her jaw was wired shut for 9 weeks) just make me cringe.  Seriously.  Shudder!

So, she appears to be somewhat comfortable.  Although I highly doubt that she would agree.  She's already tried to twist all around, which has GOT to hurt.  She's a bit swollen - around her face especially.  But that's probably normal given the trauma, fluids and blood lost and received.

The body cast is SUPER cute - as far as casts go.  And her baby doll has an exact match of a cast.  The pair could NOT be cuter!!!  (If I do say so myself.)

Oh, and before I forget, the surgeon told us that after the cast comes off that she will put her in a brace for a few months.  Fabulous.  During the summer.  That should be fun.

Okay, just wanted to let you know that I've calmed down and have returned to my normal, fun-loving, funny self (if I do say so myself).  So no worries.  All is good in the CICU (cardiac intensive care unit) so far.  Well, again, I doubt Harlie would agree.  She's looking pretty miserable right about now.  Break. My. Heart.

Thanks,
Christy

Harlie's Toothless Smile

I know it has been a few days and no new post. Nothing to be alarmed about. Just busy days with not enough computer time. Harlie is happy and she has been loving the warmer, sunnier days we've had lately. Well, who isn't, right? I know that I am more ready for spring and summer than I have ever been!

Tomorrow morning we are headed back to Norfolk for our weekly appointment with the Infectious Disease docs. Hopefully this one will be a lot shorter with less drama and less elevators!

We are trying again to meet my friend Melissa and one of her daughters so the kids can play in the play area at the mall. I am bound and determined to give Harlie some sort of reward after these appointments!

Harlie has been doing really well with her communication device. The other night she coughed during dinner, put down the puzzle she was working on, grabbed her device, (at this point Tom looked at me and said, "this should be interesting" as we watched her do this) turned it on, navigated to the page she wanted like a pro, and pressed the "I need to be suctioned" button.

Tonight, after dinner, she used it to tell us she wanted to go outside. None of this is "new" communication for her, as she can communicate those things with signs, but the thing I find amazing is that she gets that she can use it to "talk". And it is going to be SO cool when she uses it with someone who doesn't know sign.

Anyway, it is late, but I just wanted to leave you with some pictures I took of Harlie outside on Sunday. These are the first pictures that show her missing tooth.







As you can see, she digs accessories. She loves hats and she won't even consider going outside without sunglasses. Period. So, needless to say we've built a small collection. This particular pair is from a group of girls I used to work with many years ago (back before Murphy was born!). A couple of them brought me lunch a week ago and a get well/recovery bag for Harlie stuffed with goodies. How cool are they?

To be honest, while I think she is adorable, I'm still having a hard time getting used to it. The wire on her right side went between her lateral incisor and her canine and pushed them apart. To me, this gives the appearance that she's missing two teeth. That's the part that bothers me most. And now that she doesn't have the front one, the lateral incisor has nothing to push it back over to where it was. So, I assume it will stay the same for the next few years. Guess we'll have to see what the dentist says - when we ever get that back in our schedule!

Well, that's it for now. I'm hoping that tomorrow will be a good day with some fun at the end. I'll let you know how it turns out...

Thanks,
Christy

Teeth

Well, Harlie has 3 upper teeth coming in. Two have broken through and the third is right behind. I mentioned before that we were worried that her teeth would come in gray. Well, her bottom teeth are white, so that's great. So, I think it is safe to say that all her teeth will be white. Now, they are crooked, but that was expected. You can't have half a jaw and expect your teeth to be perfect.

Today Harlie's occupational therapist is coming to work on oral feeds. I don't know if I've mentioned it or not - but Harlie does not swallow AT ALL. So, needless to say, between that and cutting teeth, she is a drool monster. Anyway, I'm not expecting much. I've recently attempted swallowing trials and they were not remotely successful. I fully expect a very long road ahead as far as that goes. But, I just tell myself that one day, she will eat by mouth. Until then, I just try to focus on all the positives that tube feeding provides. It is really great when I have to give her meds (especially when there's 5-7 of them!).

Well, I spoke with the coordinator from Children's in DC yesterday. We are all set for the 18th. We have to be there at 9am for an echo, then the profusion study at 11:30 and consultation with the surgeon at 2pm. So, it will be a long day.

Oh, last night when I was putting Harlie to bed, I picked her up and hugged her and I'm not kidding - I think she hugged me back! She put both her arms around my neck. It was so cute! She really is a very funny little baby. Well, time to run. I hope you are all well. Talk to you later!

Take care,
Christy