TMJ Update

Hi. There have been some developments with Harlie's TMJs since I last blogged. 

Here's a recap:

April 2021 - She had her first prosthetic TMJs placed on both the left and the right.

May 2021 - a growth appeared at her incision sites, I took her to several doctors to try and find out what it was. Just yesterday I found a clinical note from one of the docs we visited during this time period. Her note said that mom was overwhelmed and teary at times. Yes, it was a VERY hard time because people were still nutzo about Covid and getting Harlie in front of people with a serious issue was such an unnecessary battle. 

August 2021 - I finally got her into the OR with her ENT in DC. He said it was an abscess/infection. They gave her a PICC line and a two-week course of IV antibiotics.

September 2021 - the abscess returned, so infectious disease put her on Doxycycline. Over the next year, we attempted to take her off Doxy several times, each time the infection returned, so she went back on Doxy. 

November 2022 - the infection returned on the right side only, despite being on Doxy. After consultation with several of her doctors, the decision was made to return to Boston to remove the TMJ.

April 2023 - the right TMJ was removed since that is the side where the infection re-appeared. The surgeon said the right side had a track and we never would've beat it with antibiotics. He put a spacer in it's place. 

October 2023 - a new right TMJ was placed, and the left TMJ was repaired since he found it to be dislocated.   

December 2023 - We were finally able to stop the Doxy! Yay! This was great, because by November, it became difficult to get her Doxy at all. For some reason, there was a low supply, and I would have to go to several different locations to get what she needed. Unfortunately, I've noticed that there's been a major problem with getting any kind of customer service when it comes to medication. I get that the pharmacists are over worked and under paid, under appreciated, etc. But, at the end of the day, my kid needs this medication. I know that they don't know why she's getting this medication (I think a lot of teens take Doxy for acne) - but they really do not care if she goes days or weeks without what she needs. I'm the one who has to figure it out, feeling like I have no help. This became a huge stressor and just remembering it now as I write this makes me so mad. I mean, I am at our local pharmacy so often and I see the same people (for the most part) over and over and there is never any type of recognition that they've ever seen me before. Or that we just had the exact same conversation about trying to get Doxy two weeks ago. I just don't understand. 

So, when we were finally able to STOP giving her Doxy, we were THRILLED. It was a little scary at first. But, her surgeon said he felt really good about how the surgery went and he didn't have to go into her mouth this time, so the whole site was cleaner, in general. 

I'm guessing that you might know where this is going...

On the 20th of January, I was getting Harlie ready to go to Caylee's baby shower. I looked at her incisions (which is now just something I do on a regular basis) and noticed a bubble/blister looking thing on her left side. I really can't describe how I felt when I saw it. Honestly, I think I just couldn't deal with it. I told myself there was NO way this was happening again. It was just some other weird thing. 

But it isn't. I know it. It looks exactly like the very first growth that appeared that summer in 2021. I just can't believe it. I mean, how can this be? ARE YOU FUCKING KIDDING ME?! Can this girl catch a break, please? OMG! I just don't know how much more we can ask of Harlie and her skin, which has been cut so, so many times. Too many times! Under her jaw is all scar tissue at this point. 

I am feeling so overwhelmed right now. I just don't know how we are going to do this again. I don't. It is too much. I'm telling you - it is TOO much. I just can't even think about them having to replace her TMJ, AGAIN. I do not ever want to return to Boston Children's Hospital. No offense to BCH, but I am so done going up there. If I had known at the beginning that we would STILL be going up there 12 years later, I don't think I would have ever started. 

I just want to say that going out in public (or a baby shower to celebrate someone I love) while I'm trying to process heavy shit is so fucking hard - and it is getting harder. It is like I have a bucket of water and everything is fine until it fills up too much, and then it starts to spill over, unpredictably. I want to emphasize that word, because I go out with full intention of being able to keep my damn water in the freaking bucket! So, instead of being like, yes, the food is so good, your hair is looking fabulous, I love your sweater, etc. I'm like Harlie's infection is back, I shouldn't have brought her, she can't hear a thing in this loud room and no one can hear her so she's just sitting there and she can't play these shower games and my heart is breaking into a million pieces.  Like, I'm carrying it and it is fine until I bump something then I spill water everywhere and then, I'm like, oh shit, sorry I got my water all over you at this baby shower. Then, after I get home I think about it and I feel terrible that I spilled the water and I beat myself up that I wasn't stronger to keep my water it in the bucket. 😑 Luckily, I was with great people and I know they are okay with me spilling my water on them. But, I still feel terrible about it all. I want to keep my water in the bucket. This is one thing I'm working on with my therapist - being kinder to myself. I am totally fine if my loved ones accidentally spill their water. I shouldn't have different rules for myself. These are all the thoughts that run through my head, on repeat, and it is exhausting. 

Anyway, it took me to the 24th for me to email her ID doc and send her pictures. Not that she needed to see them, really. I mean, they look exactly like what she's seen before. Anyway, she emailed me right back and called in a script for Doxy. We scheduled a zoom meeting for the 26th (Dr. Hahn is in DC). 

Ugh. I just can't. On the 26th, I noticed that I had not heard anything from CVS (she called it in on the 24th), so I called. Fifteen minutes later I get someone on the phone. They only have two bottles of Doxy and they don't know when they are getting more. "Its on order" she said. I've heard that before. She told me that a different CVS has four bottles and another one has six. I just can't do this again. 

Another update I don't think I've talked about is how we had to start a beta blocker for Harlie's heart issue that came up since August or so. It was an issue in Boston that bought her a longer stay in the hospital. Anyway, it is a compounded medication, which requires us to go to a specialty pharmacy (not CVS). So, I suppose if I'm already going to a different pharmacy, maybe I should send the Doxy there. So, I call and a REAL PERSON answers the phone! He said they have to order it and would have it the next day. Also he said they will try to make sure that they have it when she needs a refill each month. So, I sent an email to her doctor asking her to send the script there instead of CVS. While I am certainly NOT happy, I do feel better about not having to deal with CVS regarding this particular medication. 

Also, on the 24th, I was at work. I missed a call and I recognized the number, but couldn't remember why. Then I got an email message to call the nurse at Harlie's school. Ugh. I know it sounds crazy, but for a few seconds I sort of panic. I mean, it's a "controlled" panic, in that I don't think anyone would be able to look at me and know that I'm freaking out on the inside. But, I was. The school nurse put Harlie's nurse on the phone and she told me that Harlie was having some shortness of breath, (or labored breathing? I can't remember) a scratchy throat and increased secretions. But, her sats were good and she didn't have a fever. She said they had been sitting in the clinic for a few minutes and she seemed fine and she said she wanted to go back to class. So, they did. 

But, when she got home, her voice sounded really strained and she didn't look like herself. She ended up staying home Thursday and Friday. I can't believe it took this long to get to her. Crazy. Seems like we aren't even giving it to each other. There are days in between one feeling better and one feeling bad.

We had our zoom meeting on Friday. I like this doctor so much. I guess if you're going through something crappy, it is really nice to have good people in your corner. She asked me when I first noticed the abscess, and I had to admit that it took me several days to let her know. I just knew there was no denying it once I told her. She said she got it, which is one of the reasons why I like her so much. I wasn't able to actually start her on Doxy until the 27th. She said that I need to check in with her in two weeks. Hopefully the abscess will respond. I'm not even going to talk about what we do if it doesn't respond. We'll have to cross that bridge when we get there. 

Since January has been so crappy, I haven't taken any pictures. Well, except of the dogs. They are always cute, no matter what is going on in this crazy house. So, here's Mabel, since it has been a while.

That's my blanket she's stealing, by the way.

Mabel staring down a squirrel.

As always, thanks for reading! 

Much love,

Christy xo

Long Update. No school. Quick ER stint.

I started this post on November 25th...

I don't even know where to begin since it's been so long since I've last written.  Harlie is fine.  She's happy.  The bruising is all gone.  She is still drooling.  Some days are better than others.  She is finally getting the two front teeth that she's been missing for forever!  I think she lost them during her spinal fusion surgery back in March of 2011.  I'm anxious to see how her smile and face will look with her "new" jaw and with all of her teeth.

I really need to work on finding pictures of her after all of her jaw surgeries.  It would be interesting to see how her face has changed through the years.  But our photo storage is a mess and would take me hours and hours to go through them.  So, I don't see that happening any time soon.

Things are crazy as usual.  But, Harlie is finally free from antibiotics since practically July!  It was a weird adjustment not giving her any extra meds.  I am glad to have that all behind us now.

We have a date for her heart cath - December 13th.  She will have a pre-op appointment with her pediatrician earlier that week, and will have to have some blood work done.  I think they will keep her overnight after the cath.  It is in DC.  Clearly, I'm hoping that it will go well and that we'll finally get some answers regarding this oxygen requirement.

I am more over this than I can possibly put into words...

I find it very stressful to need the oxygen all the time.  It's also tiring.  And it's tiring to be stressed. The other morning, I switched the regulator from the tank we used the prior day and put it on a new tank.  But air leaked.  So, I tried again.  Still leaked.  So I went in the house and got a new tank and tried again.  Still leaked.  So, it wasn't the tank, it was the regulator.  But, it worked just fine yesterday!  So then I had to go back in the house and get another regulator (which I just happened to order the prior week, just in case).  Now, what if that happened when we were at school?  She wouldn't have been able to get oxygen until I brought her a new regulator.  And what if I wasn't at home?  So, now we have to carry around an extra regulator.  And it's those experiences and "what if" thoughts that makes this so freaking difficult.

And the worst part of it is that all the work we've put into giving her a better airway, is almost for nothing as long as she's on oxygen.  She can't be capped.  And she can't have a sleep study.  And she certainly can't be decannulated (get the trach out) on oxygen.

And, most importantly, I hope this need for oxygen isn't a sign of a larger problem with her heart or her lungs, or both.  December 13th can't get here fast enough.

It seems I am not done wishing time away.  It is not the way I want to live.  I want to stop and enjoy.  I want to provide her with better, age appropriate experiences.  Like this one...

Maybe 2014 will be our year of less medical, and more joy.  Wouldn't that be something? Because I gotta tell you, 2013 pretty much sucked.  We are ready for uneventful, boring and steady.  In other words, joy.  When I close my eyes, I can see it.  Funny, though.  It's always been that way.  I've been thinking that was right around the corner for years.  That's hope for you.  It gets you through, even when it doesn't turn out the way you wanted.  Then after the disappointment, hope returns for something else.  That hope is a funny thing.

So, now that the heart cath is just three weeks away, I am worried about her getting sick.  And she is today.  She has been home from school for two days and I will keep her home again tomorrow.  At this point, I think I am ready to throw in the towel on this school thing.

On Monday, I didn't have a nurse for the first half of the day.  So, I took her to school.  It's a lot of work getting her to school.  It takes all of my time from 6:30am to 8:30am.  So, Tom handles the boys and I handle Harlie, with the help of a nurse.  It's quite ridiculous.

Anyway, as I was getting her out of the car to go into school after 8am on Monday, I noticed how insane the whole process was.  And how incredibly drained I felt.  I just don't think I can do this anymore.  And if I feel this way, then how does Harlie feel?  After all, she's the one who needs the oxygen.  And she has to work so hard for everything.  And after a really rough year, isn't she exhausted, too?  Is she really able to put all her energy into learning if she's using so much just to be there?

So, I wrote out the pros and cons to putting her on home bound services until January.  The only real con is that she won't be in school - with her peers.  But, when she's at school, she's working.  Not playing.  And to be honest, she doesn't play with her peers.  At all.  For whatever reason - she doesn't interact with them, despite their many efforts.  And it breaks my heart.  Either she's just not ready, or she knows she can't communicate with them, so why bother?  Or she just doesn't have the energy.  I can say for certain that I don't have the energy myself to play with my friends as much as I want to.  Now throw in a major communication obstacle and I guess her actions are understandable.  She interacts just fine with her brothers at home.

~~~~~~~~~~~~

November 29

It is now the day after Thanksgiving and I have officially made the decision to keep her home from school from now until January.  I've told her school and all the necessary parties to make it so.  And despite all the thought I've put into it, it still doesn't feel good.  It just goes against everything to purposely keep your child OUT of school.  And it makes me sad, too.  Is accepting the same as giving up?  Maybe not.  But it feels like it is.

Just in case there's any confusion, home bound isn't the same as home schooling.  With home bound, her teacher from her school comes to the house to teach her for one hour.  For one, she needs a teacher specialized in hearing impaired learning.  There aren't many.  So, her teacher who teaches her at school comes after the school day to teach Harlie.  The formula for home bound is one hour for each school day missed.  Of course, this is for a typical student and is to cover general education.  I have to wonder where her IEP (individualized educational plan) comes in since it includes gen ed AND hearing impaired time each day along with one hour of speech therapy per week.  So, I'm hoping they will add some services to her home bound schedule.  I want to do what's right for her health-wise, but I hate to have to sacrifice educationally at the same time.  I'm hoping they don't want that either.  So, we'll see.

Since she requires so much specialty education - there is no way I would EVER consider homeschooling her.  I've had to learn a lot to take good care of her.  I'm sorry but there is no way I could do her justice in the educational department, too.  I am only human after all.  Her teacher mentioned that she wants to start to use a reading book that is meant for English as a second language students - I would never have thought of that.  That just proves that the more brains that come together for Harlie's education, the better.

I feel really bad about not blogging in so long.  And I feel especially bad about not posting some thoughtful, thankful post about Thanksgiving.  I am thankful every day of the year.  Most of the time.  But, right now, I just don't want to talk about how thankful I am.

To be honest, I'm having a rough time.  This year has been so hard in so many ways.  And it has taken a toll on me.  We were supposed to go to Tom's mom's house in Pittsburgh for Thanksgiving this year.  But, we just couldn't.  On top of Harlie having a cold (I'm guessing) we've had to travel so much lately and it has worn me out.  I just couldn't bear to think of packing all her stuff up again.  Every time I pack her stuff, that means it has to be unpacked, then repacked, then unpacked again.

And there's a level of stress that goes with packing her stuff.  If something breaks, I won't be able to run out to CVS and buy another one.  So, I have to pack more than I'll probably use.  And what if I forget something?  I usually think about that for hours after we've left.  Even with this list I've prepared, I still manage to screw something up:

It doesn't help that I STILL have this stupid piriformis syndrome.  It is commonly known as a "pain in the ass."  The piriformis is under your glutes (your butt) and it squeezes on the sciatica.  When it first started it felt like it was a cramp that I couldn't relax.  Then it started pressing on my sciatica.  It's awful.  And the funniest part is that sitting is one of the worst things you can do!  Now isn't that something?  As freaking worn out as I am, sitting causes the most pain.  Someone has one hell of a sense of humor, huh?  It doesn't necessarily hurt while you're sitting (although sometimes it does) but I will pay for it the next day(s).  We went camping a few weekends ago and it was a three hour drive each way.  It knocked my recovery back a couple of weeks at least.  And I was in a lot of pain for several days afterwards.

Anyway, I'm doing these exercises several times a day to try make things better and I'm seeing Rob Green at Active Chiropractic regularly for active release therapy and e-stim.  I'm making progress, it's just taking a long time.  And I've always felt that when I feel strong physically, I am stronger mentally.  So, now that it's been since July since I've really been able to do anything physically, I'm feeling pretty weak mentally.  Running was a huge stress reliever for me, and it's been gone now for FIVE horrible months!  It's killing me.  Blogging is another stress reliever, and well, you can see how often I've been able to do that!

So, in summary, I'm worn out.  I'm beat.  I just don't have it in me to do things that I used to do.  A perfect example - today Tom and the boys went to get our Christmas tree.  Harlie and I both really wanted to go.  But, she still has a cold and is very junky and the thought of packing her up was just too much.  So, Tom took the boys to get our tree, and Harlie and I stayed home.  I would have worked to make this happen before.  But not today.

~~~~~~~~~~
December 5th!

UGH!  It is now Thursday, December 5th!  I have been trying to finish this post for weeks!

On Tuesday, I woke up to find another abscess in Harlie's jaw incision.  My heart sank.  Of course all I could think about is what we had to go through for the last one.  So, we packed her up, I packed an overnight bag for myself, cancelled all appointments for the day, got coverage for the boys for after school and took her to the emergency department at VCU.  We got there at 9:30am.

How many photos do you think I have of Harlie
in a hospital bed?  Hundreds I'm guessing.

When the nurses came in with the IV kit, Harlie grabbed her arm (in a protective way) and cried, "No!"  We tried so hard to talk to her about being brave and still and how it would be over quicker with less pain, but she's just not ready for all that nonsense yet.  I will say that she seemed to try.  But, she's just not there.  One day... and then I think, when she gets there, will I be happy or sad? I guess a little of both.

They paged the plastic surgeon who took care of her last time (in August).  A few residents came to check her out and then the surgeon came down.  She said it was definitely smaller and less serious looking than the last one.  Since there's no hardware in there to save anymore, she thought she could just open/drain it right there in the ED to avoid having to take her to the OR.

At first I was nervous.  They've tried various drugs to help her calm down for things like an IV stick or echo (which is ridiculous - but that's how stressed she is when she's in the hospital) and it's never worked.  Her anxiety just doesn't stop.  So, I told them that, thinking they shouldn't even try.  But then they asked if they had ever given her Ketamine for that.  Well, I can't remember that!  I'm pretty sure they've given her Ketamine before, but as for at the bed for a procedure, I don't know.

And in that moment, when I have several doctors looking at me to tell them if I'm comfortable with doing it - I feel so freaking overwhelmed by her medical shit that I want to scream. There's so much I just can't remember anymore.  I should have started my own database when she was born.  As if I had time for that.

Anyway, I asked for a moment so I could think it over.  I hear all the time that I'm a good advocate for Harlie.  But, in these moments, I don't agree.  It's hard not to feel pressure from doctors.  And it's hard to know if the uneasy queasy feeling in your stomach is mommy gut or if it's just stress from being thrown into a crummy situation with no time to prepare.

In the end, I decided to let them try.  A doctor came and explained Ketamine to me in detail.  And I thought that it was worth the effort to try to avoid the OR and overnight stay.

Luckily, it worked.  It seemed superficial and was so small that she could barely put any packing material in it.  The packing material is purple and if it turns white then that means it's come into contact with bacteria. Her white blood count (WBC) was only 10,000, which is normal.  It gets elevated when the body is fighting an infection.  I'm really hoping that means that maybe her body was just trying to get rid of a stitch that didn't dissolve or something vs. an actual infection.

She was "awake" for the procedure.  Well, not really.  Her eyes were open, but she was elsewhere.  It was kinda freaky to see her eyes open the whole time.  After it was over, she gagged for about 15 minutes (he told me that gagging happens in about 20% of the cases).  Then she slept.  And she slept HARD.  Her nurse was getting a little nervous at her low heart rate.  But, that's the way Harlie's heart works when she's sleeping.  That's why she has a pacemaker.  It kicks in and makes her heart beat if her rate gets below 50.

As a precaution, they put her back on those freaking antibiotics (Clindamycin) for another 10 days.  They had her recover there for over an hour, then we got to go home.  It was close to 9pm I think when we left.  It was a long, hard day.  But, better than what I was expecting when we left that morning.  All during the waiting of the day, my lower back was so stiff I could barely move.  When I left and got home, it was way better.  It's clear to me that my body is having a hard time with stress.

Now I just have to hope like hell that this doesn't mess up her scheduled heart cath.  I've kept her out of school to keep her healthy and then this happens.  The problem is that is such a bad spot for a wound to heal!  Between her drooling, coughing secretions and the trach collar rubbing on her jaw, it's close to impossible to keep that wound clean!

Today is Thursday and we had to remove the packing and take a look at it.  The purple packing was white.  But she's colonized with pseudomonas, so that isn't surprising.  We put a little more packing stuff in there and taped it up.  We'll take a look again on Saturday.  They sent off some to culture, so hopefully when that comes back we'll know more.

At this point, I've been in touch with CNMC and they are willing to wait and see how she does before making us reschedule entirely.  My fingers are crossed that the culture comes back with nothing.  That's what actually happened in August.  They treated her so aggressively last time to save the hardware.  But, it is possible to have a sterile abscess.  So, that's what I'm hoping for.  I want this heart cath behind us.  I want to know what the heck is going on in her body that's making her need this oxygen!

I am ending this post here and now.  It is way too long and covers way too much ground.  And if you feel stressed after reading this, I'm sorry.  Truly.  I really want to be positive.  But, it's difficult right now.  And it's Christmas.  The little energy I have must go to the kids.  You know when your kids are really excited about something and you have to be excited right back?  Yeah, well, I'm running very low on that kind of energy right now.  I'll figure this out.  We'll all persevere.  I know it.  And I'll get better and will get back to my old ways and all will be good again.  No worries.

Much love,
Christy xo