Post-Op Days 8 and 9. ED/Admission

Last night (Tuesday night) was okay, I guess.  Caylee put fresh dressings on Harlie's wounds right before she left and about an hour later, they were soaked through.  I took a pic (oh, you do NOT want to go through the pics on my phone) and sent it to a friend of mine who is a nurse and works at our local hospital.  She thought it was too substantial to continue to treat at home and she encouraged me to bring her to the ED.  I am not easily convinced to take her to the ED.  So, my friend took her phone to the ED and showed the pics to the attending.  He/she (I can't remember) said to bring her.  This was sometime around midnight. I checked on her again and the bleeding appeared to stop.  Her dressing was fine.  So, I sent another pic, just so they knew I wasn't crazy.  I told them I was going to wake up every two hours and check on her and if this dressing got soaked, I would bring her then.  She was "fine" all night, her heart rate came down and was good all night.  Her dressing was stable.  I think at 5 or 6am, Tom woke me up to ask her about meds, I told him what to do and he told me her dressing was still white.  So, he let me sleep.  At 7am I got up to check on her and the dressing was SOAKED.  I don't get it.  Ugh.  So, I told my friend that I was getting dressed and was taking her to the ED.  

I also texted her pediatrician and she called ahead for me.  I also texted our surgeon friend, and he told me to let him know when we got there and he would come see her.  

Since we had a little warning that we would end up in the ED, I could tentatively try to make arrangements for the boys. On Wednesdays, they don't go to school. And Cooper had an appointment at 9am.  Poor kid.  At like 10pm he came downstairs and asked, "Mom, so what's the plan for tomorrow?" He is struggling with the unpredictability of our lives.  I told him that I had no idea, but we would get him there and please try not to worry about it.  

So, Tom took him and dropped him off and Blake (a friend of ours) picked him up.  It really takes a village.  

Anyway, I had to change her dressing because it was bleeding through and getting everywhere.  I got her dressed gave her a dose of pain meds and took her to the ED.  

I wrote all that yesterday, but the day got so busy that I couldn't finish.  Now, my memory is a little foggy and I am really tired.  So, trying to remember everything and then putting it in writing is a little exhausting.  So, bear with me...

They wanted to get an IV, so the nurse used an ultrasound machine and tried her best, but was unsuccessful. I guess there were four of us or so holding Harlie down (including the surgeon) so Harlie certainly doesn't make it easy.  The nurse got some blood, but couldn't use it for an IV.  

The results of that lab work was very concerning.  Her platelets were very low and so was her white blood count.  The resident mentioned Aplastic Anemia and, unfortunately, I googled it.  So, I was trying to keep calm and not freak out - but between the labs and her inability to stop bleeding, it made sense.  

They ordered some blood for a transfusion, but they needed an IV to give it to her.  So, they had to try again.  I can't tell you how hard sticks are when your kid is off the chart anxiety and PTSD ridden.  I told the resident that the same person who tried the first time, couldn't try this time.  He needed to get the best they had and forget about that ultrasound machine.  Just get someone who can stick a kid one time, successfully.  

Well, this nurse did.  So, they took more labs and those came back all within NORMAL ranges!  WTH?  Not that I'm complaining!  I did NOT want her to have that.  But, geez, way to scare a mom!  

But, now we were back to not understanding what is going on.  Now that I've had an entire day to learn it, I'll try to break it down for you.

She isn't bleeding like if you cut your finger kind of bleeding.  It is old blood (very dark).  So, she doesn't have a vessel that's actively bleeding.  So the surgeon said he doesn't have to go into the surgical site and look for the source of the bleeding, thank God.  

The bleeding is really more like old blood seeping out.  They put in a drain line in her neck during surgery to allow the blood to come out.  When it appeared to stop draining, they pulled the line out.  I guess the line was a little smaller than the diameter of a pencil. It appeared fine for a couple of  days.  But, then blood started seeping out of that hole.  So, the bleeding is blood that is coming from her tissues.  That's what all the bruising is.  And he thinks that is why the bruising is so much worse on the left side - because there is no way for the blood in the tissues to seep out.  Whereas on the right side, there is an opening for it to escape.  

He's afraid to put a pressure dressing on it, or close it with a suture, because then it will back up internally.  Although maybe the pressure internally might stop it.  It is hard to tell.  

I asked him about the suture removal because it is very clear at this point that there is NO way in hell she is going to cooperate for that.  He agreed.  So, the plan is to take her into the OR on Friday (I think) so he can remove them, clean her up and get a good look at what's going on.  

So, around 4pm or so she got moved up to the floor.

 

I forgot to pack food for her in my haste to the leave the house, and the hospital doesn't carry her formula.  So, she went ALL day without feeding!  I did have the tubing with me, so I was able to give her water.   Once Tom got things settled at home, he packed a bag with some stuff for me and Harlie (including her formula) and brought it to me along with some dinner.  It was the only food I had all day.  

Things are a little more challenging now that Murphy has a job and is working more.  We can't count on him to help with Cooper.  And Cooper takes what is going on with Harlie a lot harder than Murphy.  So, Tom left a little after 8pm.  When he left he said good-bye to her and on his way out he told me that he thought she felt hot.  Well, an hour later her nurse checked her temp and it was 101.  Crap.  And that is while she's on Tylenol around the clock.  

So, the resident came to tell me that they had to get more blood cultures and she had to have another IV placed.  Damn it.  So, I told him the same thing I told the resident down in the ED.  No ultrasound machine, send someone really, really good.  

It was probably around 11pm or so, when in walked two people - with an ultrasound machine.  For reals? I will say he introduced himself as a doctor from the ED.  Well, that's interesting. I told him our experience with the ultrasound machine and that I wasn't loving the idea of trying it again.  He said that the ultrasound machine was "his thing."  This is where it gets so hard.  I have heard people say things like that, then they end up sticking Harlie three times.  I mean, I don't know these people, I don't know their track record.  Are they really good, or what?  And I can't stop them.  I have to let them do their thing.  But, there is still an instinct to protect your kid, and I didn't want them to have to stick her any more than necessary.  Also, they do it and leave.  I am the one telling her she has to do one thing after another that she hates or causes her pain.  

He got it on the first try and he got a big vein.  I told him good job.  And then he said thank you for trusting me.  Nothing personal, but man was that hard!  They added Vancomycin (antibiotic) or her meds (along with Zosyn). Vancomycin can be hard on veins, so great job to him for getting a big vein!

At some point late in the night, Harlie's nurse asked me if I wanted her to bring in a bed for me to sleep in.  Um, are you kidding me?!  

Oh, I was so happy!!! You have no idea!  The only time I've ever slept in a bed in a hospital is when Harlie was in rehab.  So, yay for that. Although, according to my Garmin I slept for a total of 1 hour and 46 minutes, and not in a row.  And, boy do I feel it. 

Anyway, I had to change her neck dressing at 1am, 4am and then the docs changed it at 7am. All three times the dressings were completely saturated.  Crazy.  And she wasn't moving around, she was just sleeping.  

Thursday

Tom came by in between appointments he had close to the hospital.  He always brings energy with him.  I am lacking in the energy department, that's for sure. 

The other night Harlie received a package.  It was from "Friends in the Neighborhood."  There were actually two packages and this awesome face mask was in one of them...

Hahaha!  Sooooo funny!  Thank you so much!

We've had to do a few dressing changes today.  And we are trying warm compresses on that really bruised side because they said it can help the blood break down and get dissolved by the body easier. Or something like that. 

Well, this is all I have time for today.  Thank you so much for your continued love and support.  We appreciate it so much!

Much love,

Christy xo

 

Post-Op Days 5-7

Post-Op Day 5 - Sunday

Hi,

I'm sorry I haven't posted in a few days.  There just hasn't been time. I've been writing what I could, when I could, so this post might be a bit choppy. 

So, on Sunday, Tom got up early and went to the airport to pick up our rental car.  I headed to the hospital and when I got there plastics was in her room.  He asked me if Harlie had ever had an unusual amount of swelling post op before.  No. He said that she does have more swelling than they expected.  He wondered if one of her heart medications might have had a negative affect on her swelling.  He also asked me if we put ice on her face after surgery.  

Well, this is a real problem with Harlie's care.  Because of her heart defects, she always has to go to the cardiac intensive care unit.  But, the negative is that those nurses don't normally take care of craniofacial patients after major jaw surgery.  So, they don't do that kind of care on a regular basis.  Ice wasn't mentioned for a while (hours/next day, I can't remember) and they were not great ice packs. I really wish her care could be handled differently.  There's got to be a better collaborative approach to her care.  

Anyway, after they left, Harlie asked me for her tablet.  I looked everywhere, but it was gone. I held out hope that her night nurse put it somewhere, or that it got mixed up in the linens, etc.  I really wanted there to be a reasonable explanation that ended up with her getting her tablet back. But, that wasn't the case.  Someone took it from her bed while she slept.  Her room is right across from the nurses station (they said they put her there to keep an eye on her).  So, it was an employee.  The trash had recently been emptied, so it could've been whoever took her trash.  Seems like it would've been worth asking who did the trash in that unit.  Yet, no effort was made.  They called security (what a joke). There are no cameras. Tom did the "find my device" thing and it was still in the hospital until late afternoon/early evening.  Tom locked the device, he made it alarm, etc. Unless Tom and I searched the hospital ourselves, there was no way we were getting it back.  I just can't explain how infuriating this is, how violated we feel, how incredibly awful this is for Harlie.  

I know the easy solution is to replace it with a new tablet.  A better tablet, even. But, it isn't that easy. Harlie gets attached to things.  She doesn't go to school.  She has no friends.  She has no activities she's involved in (soccer, dance, etc.).  When you have less in your life, what you have means a lot more.  

A few years ago she had a tablet that was full.  She couldn't put new apps on it and that was driving her crazy.  Easy - get her a new tablet with more memory.  So, Tom got her one and excitedly gave it to her.   She took one look at it and said, "No. Take it back."  She didn't want a new tablet.  She wanted her tablet to work better.  We tried several different ways to explain that it was full. I don't know why this was hard for her, but it was. Tom took a few days to think about it.  He came home one day and said, "Harlie let's do an experiment." She was all about that.  So, he put several different sized bowls and had her fill them up with water. He asked her to put more water in a bowl.  She said, "It is full, no more water will fit." So, he reached for a really big bowl and he said, "See how much water it holds?  This is like a new tablet...."  And she said, "No way!" and left the kitchen.  But, she thought about it and realized what she needed to do.  She couldn't watch him transfer the stuff from her tablet to the new tablet.  She actually sat there saying to herself, "Go to your happy place, go to your happy place.  Daddy!  I can't find my happy place!" Haha! The thought of letting go of her tablet was so hard for her - even though the new tablet was going to be better, and she was still going to have all of her stuff the way she wanted.  

Now, her tablet is gone.  Taken from her while she slept in a hospital that was supposed to be watching her, taking care of her and keeping her safe.  

The realization that we had a new, huge problem that we couldn't solve, and that was going to hurt our child, was awful.  There is no getting her tablet back.  Period.  It is gone.  We will get her a new one.  A better one.  And she will have to get over it.  She has no choice.  We have no choice but to tell her.  She keeps on asking if they have found her tablet yet.  We don't have the heart to tell her the truth - that they aren't looking for it.  They don't care.  And whatever employee took it will continue to work there, with access to do it again.  

We have had an amazing amount of people that think this was equally as despicable as we do and they have offered to help.  My sister-in-law, Kristie, started a GoFundMe and collected just over $1,000.  We received an Amazon gift card from friends. And so many friends have reached out to me personally offering to do whatever they could.  We appreciate you all so much.  I know it must not be easy to have to watch Harlie and us go through so much and you not be able to do anything.  We just appreciate that you're there for us. However, if you still want to help in some way, you can donate to We Heart Harlie & Friends.  This hospitalization cost us over $5,500.  We Heart Harlie & Friends helps with costs like this, not only for us, but for other families, too.  

Back to my story, her nurse came in to take out her IVs (the last thing they do before discharge) and Harlie said, "No!" I said what I normally do, "Harlie, don't you want to go home?  They have to take them out so you can go home." Then she said, "But, I'm not ready." That is a first.  Then she pointed to her face.  I told her she can't stay in the hospital until her face heals. And I went on to say that we all love her and think she's beautiful and we aren't frightened or bothered by her swelling or bruises.  That wasn't as comforting as I hoped.  And she still protested and was extremely uncooperative, which made the nurse call for more help.  So, after another nurse got there, I had to step away.  Ugh, that was really hard and I had a really tough time keeping my stuff together.  After they were done, I took her into the bathroom to get her dressed and she told me that she wasn't leaving without her tablet. Ugh. 

That was the most unhappy, uncomfortable exit from a hospital stay we have ever had.  And that's saying a lot.  

We got in our rental and drove home.  We had to stop three times.  It broke our hearts to see Harlie hang her head, trying to hide her face from other people.  The trip home was actually quite difficult.  It is just very challenging to take care of a kiddo (who still needs a lot of care) in a moving car.  We had a bag of prescriptions and there wasn't Tylenol or Motrin in there.  Luckily Caylee had packed us some, but it was in Harlie's suitcase, which was under everything in the back of the SUV (including her wheelchair we had to break down to fit in the car).  So, Tom had to take everything out, open up her case, dig out her home meds, and then put everything back in.  All the effort and stress just adds up.  

Anyway, we made it home a little after 8pm.  

This is how she looked and why she hung her head. 

Oh, our sweet girl. 

That night was a rough night. We set our alarms to get up to give her meds on schedule.  I took the 12:30am one, and Tom took the 4:30am one.  After I got up and gave her meds, I couldn't go back to sleep.  At around 1:30am she was coughing and sounded like she needed suctioning.  So, I went in there and she said, "I keep hearing loud noises." She wanted me to hug her, so I just laid with her for a few minutes until she seemed settled, and then I went back to bed.  

I don't like to cry and I've mentioned that several times in my blog. But, I couldn't help it.  In that moment, I hurt so, so bad.  And I was so afraid.  What if her hearing was damaged?  What was happening in her head?  And I thought about the suicide of the CEO of Longhorn Steakhouse, who took his life after experiencing unbearable tinnitus.  My thoughts just ran away and I was so, so afraid of her being in pain that we don't know, understand or can fix.  And, all that lead me to an overwhelming feeling of regret.  Complete and utter regret.  I did this to her.  And I hated myself.  I woke Tom up, which I felt terrible for doing since I knew he needed his sleep.  But, I knew he'd want me to anyway. It was a really hard night.  Once I finally fell asleep, I had a dream that I went into Harlie's room the next morning and she looked totally normal, the way she used to.  And I knew I was dreaming.  

I keep trying to tell myself that this is all temporary and she will heal and everything will be great.  But, it doesn't change how hard it is right now.  

Monday was a busy day of just getting settled.  In the early part of the day Harlie came downstairs to work on her Lego set.  While sitting there, blood kept dripping off her chin and it was annoying her.  It was annoying her enough that we were able to convince her to let us clean her up.  So, we cleaned her wounds as best as we could.  But, since her ear is still bleeding, it drips down and then makes the whole wound site bloody, which then dries and becomes a big, unhealthy mess. 

Tom has a client who is a plastic surgeon.  He reached out to Tom and asked him if we needed anything (like suture removal).  So, I called him and gave him an update on Harlie and what we are struggling with (her bleeding from her ear, trying to keep her wound sites clean, etc.).  He asked me where we live and said he would come by and take a look at her that night!  How great is that?!  As much as I feel beat up by the universe, we are so incredibly lucky to have so many wonderful people by our side. 

So, he came by and looked in her ear and said he could see her ear drum, so that's a relief! He also had a tool that we don't have, that helped get the caked dried blood off.  He was able to get her cleaned so he could see her sutures.  The ones under her chin (that go from ear to ear) look good.  Her surgeon said sutures should come out 7-10 days after surgery.  He took a look at them and said he thinks they need till Wednesday or Thursday.  And he said he would come to our house to do it!  Yay!  

A few minutes after he left, Harlie had blood dripping down her face. I took a picture and texted it to him.  The good thing is that you could clearly see that the source of the bleeding is not her ear, it is the top of the incision in front of her right ear.  And her drain site in her neck is bleeding.  He told me to apply gentle pressure for 20 minutes.  I said, sounds easy. Haha!  So, I did and we all went to bed.  I did the 1:30am meds and Tom did the 5:30am meds.  

I woke up to Harlie standing in front of me covered in blood.  Yeah, not a fun way to wake up.  She wanted to show me her pillow (which was also covered in blood).  So, I put her in the tub and got her all cleaned up.  I had to empty the tub several times because of all the blood.  It was awful.  And it wasn't fun for Tom or Murphy who had to take lukewarm showers after I used all the hot water.   Oops.  

I put her on her bed and had her get on her left side and I held gauze on both the neck drain site and incision for like 30 minutes!  Caylee arrived to work and she took over and held it for like another 30 minutes.  It will NOT stop bleeding.  We put gauze on it and taped it as tight as we could.  But, it just bleeds through.  

So, I sent some photos to her surgeon and he said she might need some more sutures.  Ugh. There is no way she is going to be cooperative for that!  So, I'm not sure what I'm going to do about that.  

All day today she was really quiet and hardly spoke a word.  I wondered if she was just feeling really down.  Her swelling is no better today than yesterday.  And, honestly, her left eye looks more closed than yesterday.  It is really hard to look at.  I was thinking that the bath and holding her sites for an hour just stressed her out or wore her out.  But, into the evening, she made us worry more. Her heart rate is elevated for her, she was unusually out of breath after walking up the stairs.  She's been on Motrin/Tylenol around the clock for a week, so I'm afraid that would mask any fever she might have.  And, at this point, she's been bleeding continuously for well over 24 hours.  Maybe she's anemic?  

So, I spoke with her pediatrician and she said getting some labs would be a good idea.  So, we are going to watch her really closely tonight and evaluate in the morning.  I might be taking her to the emergency department in the morning.  Between her needing stitches and blood work, the ED is the best solution.  I just really don't want to take her at night if I can help it. 

The good news is that she got her new tablet today.  We ordered her a new one while we were driving home from Boston.  Yes, we got her the latest, greatest and nicest tablet we could get.  I guess not having a tablet at all (and she now understands that she is not getting her tablet back) made her much more agreeable to the new one.  She figures things out in her own time.  Honestly, Tom and I are shocked (and grateful) that she handled it as well as she did.  Tom was able to download most of her stuff from her old tablet onto the new tablet, so it had the same screensaver for example and we ordered her the same cover that she had.  She seems grateful to have it.  So, thank you to all the good people who contributed to Kristie's GoFundMe and donated in other ways.  We are overwhelmed by your kindness and generosity! 

Ok, I have to wrap this up. Thank you so, so much for being there for us. I have so much more I want to tell you about (and thank you for) but it is late and I know I won't sleep much tonight, so I have to stop writing for now. 

Much love,

Christy xo

Post-Op Day 4

Hi All,

Harlie's swelling looks like it is marginally better today (compared to yesterday).  I'll add a pic in a bit.  I've learned that the first pic I add to my blog is the one that gets highlighted when I share the blog post on Facebook.  So, I'm sorry for all of those with weaker stomachs who hate me now.  They should just be thankful their kid isn't going through this.  Because we cannot wince or show any issue with looking at her.  Poker face.  All day, people. 

It is hard to believe how swollen she is, despite all the meds they are giving her to help with that.  God knows what she would look like if they didn't give them to her! 

She has attempted to look at her tablet several times over the past couple of days, but I guess she realized she couldn't see it/hear it.  So, she shut it.  Today, however, she was able to watch a show or two.  So, that's a little progress.  

Plastics always comes super early and her nurse told us that when they came to look at her incisions and drain site, Harlie signed "stop" and swatted them away.  You don't have to know sign to understand what she's saying.  Her gusto and attitude gets her point across.  

If the nurse shows Harlie the blood pressure cuff, Harlie willingly lifts her arm.  But, if you're coming for her IV or near her face, she is not as cooperative.  Tom and I have been watching Shameless and one of the characters wears a sleep mask that I think Harlie should have.  

I think it would be hilarious, but I wouldn't want to offend anyone.  So far, most of her doctors and nurses have had really good senses of humor.  So, I'm thinking it would've been okay this stay. Oh well, next time.  Haha!

So, this morning we called home to check on the boys.  I was on the phone with Maggie (my niece) and she went and sat on the slack line in our backyard.  While we were talking, she exclaimed, Whoa!  So, I asked her what was wrong.  She told me she fell off the slack line - so I said, "Tom, pull up the camera."  Haha!

Ahhh, I'm so sorry, Maggie, but this is too funny not to share!  I have to say that you didn't miss a beat, I would never have known you fell if you didn't tell me.  Your voice didn't change at all!  I have laughed so hard watching this video!  I cried tears of laughter!  You totally made our day better!  And you're such a great sport!  Love that about you! Thank you, Maggie! 

So, here's how Harlie is looking today, on Day 4.  

She stares at me.  I've asked her several times if she is mad at me and she shakes her head, "no." I then sign and tell her I love her and that I'm sorry and she signs that she loves me.  But, damn, that stare!  I'm not sure I believe that she isn't mad.  And, really, I couldn't blame her! Our poor, sweet girl!  Oh, our hearts are aching!

I have uploaded so many pictures, just to delete them.  I want to share them, because it makes me feel like we are less alone if everyone else has to see what we have to see.  But, then I realize that probably isn't fair to you. The bruising goes from the top of her chest (collar bone area) to behind her ears and into her hairline.  We keep telling her it will all go away.  She doesn't appear to be comforted. 

Harlie watching the backyard camera with Maggie, Cooper and the dogs
talking through the phone.

The team rounded this morning.  The attending cardiologist is her cardiologist here and we just saw him pre-operatively on Monday.  He's one of the few people who knows what she really looks like.  I told Tom yesterday that I wish we thought to print out a picture of Harlie to put on her door.  

Anyway, she is now on all meds through her g-tube.  So, assuming all goes well today through tonight, we are planning to take her home tomorrow.  Tom found a car to rent, so he will go to the airport to get that taken care of tomorrow morning and then head back to the hotel, load up the car, check out, then come to the hospital to pick us up.  When we told Harlie we were going to go home tomorrow she pointed to her face.  So, Tom told her we are going to drive instead of flying home.  

Her nurse told me that when she took her to the bathroom, Harlie wouldn't go to the sink to wash her hands because she didn't want to see herself in the mirror.  I knew that, but it is kinda crazy that Harlie is able to get that feeling across to other people, too. 

Normally, I feel pretty good about taking her home, but this time, it feels weird.  She is telling us she isn't ready to go home.  We think she doesn't want anyone to see her.  We've asked her if she wants to go for a walk on the floor, or out to the garden, but she says no.  I know each day will get better, but it is still hard to constantly make her do stuff she doesn't want to do. I am fine taking her home.  I am just worried that all the moving around is going to hurt her.  The bumps in and out of doors in her wheelchair, for example.  I wouldn't even consider walking her down the street with all the uneven pavement!  Doesn't that just sound painful when you're head is aching?!  And oh, the looks we are going to get!  

We were able to convince Harlie to let us give her a shower today.  It was tricky because they don't want us to get water on her IVs (one in each arm) or in her ear.  I think I did a pretty good job, considering.  After her shower we did her wound care, I changed her trach ties, put her hair up in two little buns and I think she felt so much better.  She wanted to sit in the chair instead of getting back into bed. That's great!   

She asked for Legos, so Tom went to a local toy store and got her some.  She wanted to do it, but she got so tired and had to stop.  Man, it is hard thing to see a kid not have the energy to play. 

Side story, usually I don't remember my dreams. And I can't believe I'm going to share this with you, but I think it is so funny.  I am in a Fantasy Football league with some family and friends. And we have done it for the last five years or so. Last night in my dream, it was like 3 weeks into football season.  I made a comment to a family member that is in the league that I was sad we didn't start our league this year, and I was missing it.  They looked at me like, oh crap.  And I realized that they started the league without me!  I asked a friend if she was in it and she said, "Of course!"  So, I started to cry and walked away.  Hahaha!  I woke up and thought, what month is it?  Oh, April!  Whew!  Just a dream.  Haha!  I have giggled every time I thought about it. Silly.

Well, I'm going to wrap this one up now.  There have been lots of interruptions, so my thoughts are all over the place here.  Thank you for all the love!

Much love,

Christy xo

Post-Op Day 3

It occurred to me that when I post this blog to Facebook, it shows the first pic really big. So, sorry about that! So, I added a much better pic, so that people scrolling aren't startled by a huge pic of Harlie's swollen face. 

Okay, on to our reality...

Day 3. Peak Swelling Day.  

Dear God, I hope so.  

Last night when we left, I was feeling soooo yucky.  The good thing is that I really liked her night nurse.  She seemed like she was tough, but compassionate. And she was a problem solver.  I like that in a person.  

We left close to 9pm.  It was hard to leave her.  And as we were walking to go find some dinner, I told Tom, "This is it.  I am never asking her to go through this again." And he said, "You say that every time."  

I can't help but think that fundamentally, humans are way stronger than we give ourselves credit for.  We need to try and remember that.  Somehow, when we are challenged, we dig deep and survive.  As we walk through the streets of busy Boston, I do not see strong humans.  I see people who are afraid of everything.  I wish I could tell them that they are stronger than they know.  But, if you believe you are weak and afraid, then you will be weak and afraid.  

We are not weak or afraid.  And somehow, despite how incredibly HARD this is, we will get through it.  And, I suppose, in time, when we are faced with new information and new possible solutions, I will weigh them in the grand scheme of things and make a decision based on that information - not on my memory of this surgery/recovery or on the emotions I'm feeling right now.  It is what I have been doing for 14 years.  

But, right now, I am saying, I am never asking her to go through this again. 

Also, last night, I was able to peek in her mouth.  That front, bottom, permanent tooth is gone.  GONE!  Where did it go?  We know she didn't swallow it.  When did it come out?  I think it came out on surgery day.  I just can't explain how I'm feeling right now.  Why oh why did I make the decision to remove that damn splint?  WHY?!  March 18th.  Less than one month ago.  After all that effort, and she freaking lost another permanent tooth anyway.  After all this poor kiddo has to go through - it is just salt in the wound.  I HATE to say things like - it's unfair, or can't she catch a break?  It is hard to have a good attitude and laugh when you hear yourself saying those sorts of things.  But, fuck, it is so unfair! Sometimes, I think God has a voodoo doll of her.  I want him to pull all the pins out, hug her, say he's sorry, and then put her down and leave her alone. 

Yikes.  That might be harsh. Sorry.  But I can't help what I think when I'm pushed like this.  It's killing me, people.  Killing me!

Okay, changing subjects to talk about something good...

A while ago, I reached out to my family asking for help with the boys and dogs while we are gone.  Jordan (my niece) was quick to create a spreadsheet and sent it out to everyone so they could sign up for different shifts to cover.  How great is that? It is bringing a smile to my face right now.  

Murphy got a job right before we left.  His first day was Saturday (we left on Sunday) and he said he really liked it.  He is running food at our favorite restaurant.  And he is trying new foods while he's there, which we are LOVING. He tried sushi!  For those of you that know us well, you know how much we love good food.  And somehow we have produced three kids who do not appreciate good food.  Well, one doesn't even eat any.  Haha.  Anyway, the thought that Murphy is growing into a person who might appreciate good food is making us so happy.  Plus, this place is generally pretty busy, so if he can move faster and work harder, that would make us really happy, too.  Oh, and they seem to be keeping him busy with plenty of hours.  So, he's going to have to figure out how to manage that with his schoolwork.  Also, good skills to develop.  

Cooper tried out for track at his middle school.  Of course track try outs were this week, while we are gone.  Maggie (his cousin) had that shift on Tuesday (I think, the days are running together at this point) and she went up to the school to cheer him on.  How great is that?!  We were crossing our fingers that he made it.  

He has really been struggling with virtual school.  It did NOT work for him.  And he went from an A/B student who LOVED school, to literally failing every single class.  And for all the people who think it is from a lack of parenting - I am here to tell you that is NOT true.  Anyway, we sent them back to school the second we could.  Just the other day Cooper said, "Tomorrow's going to be a good day, all of my teachers will be there!"  Not all of the teachers have returned, so some of the classes are still virtual, even though he is in school.  Anyway, the school said that only in person learners could try out for school sports.  So, I told Cooper, this is your year, bud!!!  Haha!  

He called me yesterday afternoon to tell me that he made it!  I said, "Congratulations! I'm so proud of you!"  Then he said, "Mom, everyone made it."  Haha!  Cooper's keeping it real.  

Speaking of keeping it real, I have to tell you this... Cooper had like a 3% F in Social Studies at some point earlier in the 3rd quarter.  Social Studies was one of his favorite subjects last year, and he was put in an advanced class.  But he literally had a 3% F.  He has been doing Adrenaline with our friend Paul for the past few months.  He really likes it.  That lead to him thinking about trying out for track.  The school posted that the students have to have a passing grade in all core subjects in order to participate in school sports.  Finally, some positive motivation!  

So, after a few weeks or so, I was sitting at work and I got an email from Cooper.  The subject was "I DID IT" and he sent a picture of his grades.  He brought his Social Studies grade up to a 66.3 D.  Haha!  Well, the fact that he cared at all is a total win.  Thank you to my dear friend, Bethany, for working with him so much to help him bring his grade up!  And thank you, Paul, for helping his mental and physical being with Adrenaline!  I'm so grateful for our friends who are always willing to get in the trenches with us!  

Speaking of our friends, we had several people offer to drive from Virginia to Boston to come get us!  For real!  You people are crazy!  Haha!  Love you all, so much! We will let you know if/when we hit a dead end and need that.  

Well, we just did all of Harlie's wound and trach care and she was NOT happy.  This morning, plastics came and pulled that drain line in her neck.  Luckily, we were not here for that. I feel bad saying that.  The truth isn't always pretty, that's for sure.

Oh, interestingly, one of the docs on the plastics team that we met right before they took her into the OR said he looked in her chart and saw that Dr. Magee was one of her surgeons from way back.  He said he knows Dr. Magee and he asked us how we ended up with him.  Dr. Magee and his wife started Operation Smile and when we lived in Norfolk, VA, I worked there.  So, after I had Harlie, I called him and he did two of Harlie's first jaw surgeries.  She had a cardiac code in the OR there, and that hospital (Children's Hospital of the King's Daughters) didn't have a cardiac program.  So, I couldn't take Harlie back there.  That is why we chose Boston, we knew we wouldn't have to worry about cardiac support.

Well, today that same doctor came to chat with us.  He said he was reading Harlie's history and he had a question.  He told us that he went to her surgeon and said, "So, I was reading Harlie's chart." And then her surgeon said, "I hope you had a drink."  Haha!  Man, I love a good sense of humor! Yes, her chart/history is crazy.  Anyway, he asked him if he knew if we had ever seen genetics.  Her surgeon said, we probably had.  But, we told him no, not really.  We did very early on (soon after Harlie was born), but there wasn't much to be said.  

Well, this doc is interested.  He asked if we would want to find out/learn more about why/how she is the way she is.  I told him if it were easy, yes, but if it would take effort on my part, then, no.  He said he would make it easy and he would handle the research/study for us.  Research away, buddy!  So, he returned with consent forms and tomorrow he will come back to take our blood.  So, we'll see what comes out of that.   

Here are some pics of our day so far...

It was raining too hard to walk.  So, we got a taxi.  We tried Uber, but there are very few Ubers now and there were NONE this morning.  Luckily, there was a taxi sitting out front of the hotel, so we jumped in.  On the way to the hospital the rain turned to snow.  

  

The view from Harlie's room.

Tom took the arms off Harlie's wheelchair so I can sit in it.  

Harlie suctioning her mouth.

At this point, I don't think she can see much at all.  And she can't hear.  And she can't talk.  Ugh, killing me, people!!!

Harlie knows the buttons by touch.

They brought her a bunch of ice packs, and we put them on her face.  She didn't even protest. 🙁

Plastics came by and brought her these eye ice packs.

This is when we were getting her all cleaned up, doing wound care, trach care and changing dressings. And we keep telling her we love her and that we are so very sorry. 

When Plastics came by they said this is a lot of swelling.  Sounded like it was a little more than they were expecting.  They have her on something for swelling, and we added some Lasix and a steroid to see if any of that helps.  

Her inner ear is still bleeding.  And now they can't see her ear drum anymore.  I swear, if something bad happens to her hearing (worse from the way it already was) from this, I'm going to lose it.  

We've received some gifts while we've been here - baskets, bags and dinners.  So, thank you all so much for the love.  We are so very thankful for each and every one of you! 

Well, that's it for today.  

Much love,

Christy xo

Post-Op Day 2, TMJ Reconstruction

Hi!

Well, we got moved to the cardiac floor last night.  Usually, my take on being on the floor is that we are better off at home.  But, being so far away makes that impossible, well and the drain line, too.  There is NO way she is ready to go home.  Hopefully things have progressed in her health that her lungs seem to not take as much of a hit post operatively as they have in the past.  It has always been her lungs that have prolonged her ICU stays, so by the time she was ready to leave an ICU, she was essentially ready to go home and have one on one care by us and/or home nursing vs. one to three or four or whatever ratio that particular floor has (depending on which hospital we are in at the time and how busy they are).  

Anyway, the new room is super small (but private, so that's good).  When Harlie got over here, she was really complaining of pain.  Turns out she had not gotten Dilaudid in like 8 hours!  So much for pain control.  So, I told the night nurse (who was awesome) to please put her on a schedule and not to count on Harlie to tell them when she hurts.  It is really frustrating to have to constantly repeat yourself. Harlie already has a high tolerance for pain/discomfort and if you wait till she's crying, then you pushed her too far.  So, they took care of that and she seemed to get some sleep over night. 

Here's what she looked like when we got in this morning...

Oh, my sweet girl! I feel SO bad for her!  

Her ear is still bleeding (from inside), so she still cannot wear her hearing aid on that side.  The BAHA can be cumbersome in bed, so she keeps taking it off.  At any rate, I told her nurse that she might have to pull her mask down when she's talking to Harlie so that Harlie can have a chance to hear her or read her lips.  That muffled sound when you talk behind a mask is impossible for her to hear. Oh, I feel so bad for the hearing impaired right now!  

Anyway, the team here said pain management is their priority for her.  So, now she is on a schedule of all kinds of stuff.  Hopefully that will help.  

Her surgeon came by to check on her.  We talked about what needs to happen to get her home.  That drain line has to come out, all of her IV meds have to be changed to oral meds (through her g-tube) and we have to be able to manage her pain on oral meds.  

I haven't even told you about our logistical challenges for this stay...

The last few times we've come up here, we've been able to get the same Air B&B.  It is a mile from the hospital.  And it is super cute and comfy for us. And being able to know what to expect is really nice when you're going through a stressful time.  

Well, we had our virtual pre-op appointment with her surgeon in February to get more details about pre-ops, surgery, post-op, etc.  As soon as we talked with him and got more info about how long we'd be in Boston, we scheduled our Air B&B.  But, it was only available Sunday through Wednesday.  So, we had to find a different place to stay from Thursday on.  We tried to find a different Air B&B for the whole time, but that wasn't as simple as you'd think.  Everything is harder (and less available) with so many people having to change their way of life because of Covid precautions.  So, we got a different place Thursday to Monday.  

Of course, we had to get out of our favorite Air B&B by 11am and we couldn't get into the next one till after noon.  So, we packed up and left our stuff ready to go and came to the hospital early.  Then Tom left to go get our stuff and move it to the the new place.  He called me to say that we didn't read the fine print.  It was terrible and dirty.  And the bathroom was down the hall, shared by who knows how many people. 

Well, I've been there, done that.  After I had Harlie, I had to leave the hospital and go to the Ronald McDonald House and share a bathroom there - postpartum!  Um, never again. Life is too hard right now to deal with that on top of everything else.  So, he left and checked into a hotel.  

He's also trying to figure out how we are going to get home.  There used to be several direct flights per day between Boston/Richmond.  Now there's one flight per day.  Some days there are none!  Some days the flights are only at 6am.  There is no way we can make that work. On Sunday, there is one flight at 5:45pm.  So, maybe, if the stars were to align, she could be discharged that afternoon, and we could do that.  Of course, he can't book the tickets until we know for sure.  And it was a full flight on the way up here, so who knows if we could get on that flight.  

So, we thought maybe driving home would be less stressful. Plus, it is awful having to fly and go through all that airport crap post-op from craniofacial surgery.  People are already afraid of people. Even if you look perfectly healthy, you are treated like you have the plague. Then they see us with our swollen, bruised faced kid... it is just hard. I'd really rather not deal with all of that. 

Anyway, renting a car - not a big deal, right?  Haha, not so fast.  We started looking and even at the airport, most of the carriers said they had NOTHING available.  Nothing.  WTH?  I guess when you select one way rentals, maybe that makes it more difficult?  He found one, but we can't even reserve it because we really don't know when we are leaving.  So, we are just going to have to wait and see and hope that it works out.  After all the trips up here through the years, none have ever been this stressful with logistics. 

So, back to Harlie... she is getting more swollen and bruised by the hour.  I swear to you - the pictures do not do her justice.  I see her face, I wince, I take a picture, I look at it and I'm like, nope.  That's not what she looks like. She looks worse!  

   You can see more blue coming in...

And her mouth, lips and around her chin is more swollen than before.  She could talk a little before, but now, it is almost impossible to understand her.  Her lips can't move at all.  And her airway itself sounds swollen - she has hardly any sound at all.  She is signing to us and I am feeling pretty rusty on my sign language skills.  But, she is good and somehow gets me to understand her.  She asked me (in sign) why her face is so big.  And then asked me how long till it gets smaller.  

She has only peed once today so far (and it is now 6:15pm).  When I made her get up and go earlier, I forgot about the mirror in the bathroom.  Not that I could do anything about it.  But, she looked at herself in the mirror and started to cry.  Oh, she breaks my heart.  

Okay, well that's it for now.  I'm tired.  And I just had a conversation with respiratory therapy about their humidity system for Harlie's trach (it isn't working for her) and I'm feeling frustrated.  I don't have the energy to explain that right now.  What I'm feeling is a lot of frustration over trying to make it easier for Harlie to breathe.  How is it right in the Universe that we should have to fight for that? Over and over.  Fuckin' A.  

Sorry.  I wish I could be more positive right now.  Maybe tomorrow.  

Thank you for the love, the support, and all the kind words.  We appreciate it more than you know. 

Much love,

Christy xo

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