Pre-Op Day/Surgery Day - Left TMJ Replacement

May 4 - We had a 6am flight (which meant a 3am wake up time). This trip gets harder every time we do it. Packing is very difficult for me. I cannot start and finish a task without interruption - like packing my clothes, packing Harlie's clothes, packing my toiletries, packing Harlie's toiletries, packing Harlie's medical supplies, etc. I go around starting a task and I get to a point where I feel like I just can't do it anymore, so I go and try to complete a different task. This is really not very helpful and it really makes me feel pretty useless. Tom told me to make a list (I've made so many lists) but even that gets to be too much. 

Tom ended up having to help me finish them. Sometimes just not working on it alone can be a huge help. Anyway, all this to say that when we got to the airport, Tom asked me if I packed the trach collar mask/oxygen connector tubing for the flight. The increased altitude during the flight causes her oxygen saturations to decrease. So, she needs supplemental oxygen during a flight. 

Um. No. 😱 I thought he did since he had charged up the oxygen concentrator. Luckily, I did pack a trach collar and a new nebulizer kit, so he was able to use the nebulizer chamber as a connection from the oxygen tube to the trach collar so she could get oxygen during the flight. It was then that I realized that I didn't pack HMEs (heat and moisture exchangers). HMEs are vital when she's on oxygen and sleeping without humidity (which she has to do when we travel). Her trach will definitely get dry and she could plug. Maintaining a clear airway when she is dry is hard work. So, I really beat myself up. I mean, how could I forget such an important thing? You can't just go the store and by them! This is a serious problem! I replayed packing in my head over and over and I remembered holding a bag of them in my hand. I exchanged the bag for a different bag and couldn't remember why I did that. Ugh! I started catastrophizing (a cognitive distortion where individuals habitually assume the worst-case scenario, exaggerating the severity of situations and believing that negative outcomes are inevitable and unrecoverable). 

This has become a huge problem for me across the board (I mentioned it in my Fall 2025 post). Although, in my case - with Harlie - the potential outcomes are actual, real potential outcomes, I don't think I necessarily exaggerate them. Although, maybe that's another sign that I have it bad - since I can't even admit that there's an exaggeration. Although I can admit that I exaggerate in other life scenarios.

Since I'm on the subject and baring my soul anyway, I'll give you another crazy example. One time a while ago, Tom was out of town and he must have had the boys with him because it was just me and Harlie for the weekend. I wanted to go for a walk. As I was headed out the door, I thought, "what if I get hit by a car or abducted?" Then my thoughts just went downhill from there. What would happen to Harlie? How long before someone realized I wasn't where I was supposed to be? What would Harlie do? How long till she realized I had not made it home? Who would she tell and how? I had those thoughts even though I have gone on countless walks with no negative outcomes whatsoever! Most of the time, I can hear how crazy it sounds and I'm able to tell myself to stop. The problem is that it just happens. It happens with the ease of one breathing. You don't think about it - you just do it. I can only stop it once I realize what is happening. I cannot prevent myself from doing it in the first place, if that makes sense. 

Managing her airway without an HME is going to be more difficult. However, in reality, it is a one hour flight - and one night in the hotel. The odds of it being a real life risk are probably pretty low. But, I felt like it was a "HUUUUUGE problem" versus a "more work" problem. My brain starts to calculate the risks, all the potential outcomes and then searches for ways I can fix it. In this scenario - at the time it was happening, I was simply unable to see it as "more work" and it felt potentially life threatening. I can feel all the stress this kind of thinking causes throughout my entire body. It is very uncomfortable and I can feel the effects for many hours/days after, depending on how bad I feel the situation is. All of those feelings are because the whole process of catastrophizing triggers an intense "fight or flight" response, causing the body to experience high anxiety, increased heart rate and muscle tension. The brain interprets the imagined worst-case scenario as a real danger, leading to elevated stress hormones, physical discomfort, and potential panic, keeping the individual locked in a state of distress. 

In my walk example, it wasn't as bad, because I could tell myself I was being ridiculous before all of that response stuff happened. The catastrophizing only lasted for a few seconds. However, in the HME scenario - I did not feel like I was being ridiculous. I felt like we had a serious problem and I needed to figure out a way out of it before something terrible happened. So, as we were going through the airport and security, that was happening. So, it lasted WAY longer (like 15 or so minutes, which feels like an eternity). Plus, I was in a public place, so I was trying really hard to remain calm - even though I didn't feel anything close to calm. I wonder if that makes it worse since my body was trying to do a bunch of things at the same time? Anyway, once we got to the gate, I went alone to get some water. On my way there, Tom sent me this text:

So, I DID pack them! I almost cried - for real. That is why I put the bag back in the cabinet upstairs - because I put a bag in her suction machine bag, thus, we did not need them in her suitcase. Ahhhh, thank God. 

Unfortunately, the damage was done and I was absolutely worn out. And it was only 5am. 😑We had such a long day ahead of us! And I still had to get through the actual flight!!! 

After we landed, we got an Uber to the patient housing building (the Bon).

We had them store our luggage for us since check in wasn't until 2pm. Then we walked to breakfast. I had a cup of coffee on the way to the airport, a cup of coffee on the flight and two cups of coffee at breakfast! That is WAY more than I usually drink. But at breakfast, I wanted to just lay down on the floor and close my eyes. We headed back to the Bon and Tom called to see if we could check in early - and hallelujah they said our room would be ready at 10:30am! Thank God for small miracles! So, we walked to Target across the street and got some essentials while we waited. Then we went and checked in. Oh my God, I couldn't wait to lay down and close my eyes. I am not a napper, but I had no trouble falling asleep, which clearly my body needed (despite all that coffee)!

Our first appointment was at 12:30. It was a pacemaker check. One of the things they tell me during these checks is the expected battery life of her pacemaker. When she told me, I thought, huh, that sounds pretty low compared to last time. So I went and looked back at her records and wrote down what her expected battery life was at appointments. 

I guess when her battery life is showing one year or so, we start talking about replacement. At this pace, it will be here in no time! Ugh. I don't want to think about that surgery. 

At 1:30, we had the regular pre-op appointment with a nurse, and an anesthesiologist. Other than answering the same questions several times, it was fine. I will say that I felt like they treated us like they knew we weren't new here, which was great! 

After that, Harlie said she wanted to do something fun. I asked her if she thought going back to the room and relaxing was fun - but she said no. Darn it. Haha! So, we took an Uber to the Museum of Illusions. It was pretty cool! 

By the time we were done with that it was 4pm, so we went to the Black Rose to get an early dinner. We had not eaten since breakfast, so we were starving. Since the weather was so nice (beautiful and sunny) we decided to walk back to the Bon (a two mile or so walk). 

It was such a long day - so we were done and in bed before 9pm. Harlie was first case - so we had to be back at the hospital at 6am for a 7:30am start time. 

Since we are staying in patient housing (vs a hotel) we have access to the hospital shuttle. We normally like to walk - but if we took the shuttle it bought us a later wake up time, so we took the shuttle. 

All went well. They started an IV in pre-op and gave her some meds before taking her back. Dr. Resnick was done around 12:30pm, I think. He said all went great. A couple of things that were different this time:

Even though the left side only had a space holder in place since he removed the TMJ last May, the right side did not become dislocated. Years ago, when the right TMJ had to be removed (due to infection), the unevenness caused the left side to become dislocated. In order to fix the left side, he had to cut her open and we believe this is how the left became infected. Since the right side was not dislocated - he did not have to touch the right side. YAY! 

The other good thing is that he did not have to go into her mouth to do anything. I guess in the past, he had to do some work in her mouth. However, this time, for the first time - he did not need to do that. So, he believes this greatly reduces the risk of infection. Woohoo! 

With any luck - we will be DONE doing jaw surgeries. 

So, now she is settled in her room in the cardiac intensive care unit (CICU). Her blood pressures have been low, so they have given her two boluses of fluid hoping to get that up some. Right now it is 104/45, which is better than it was. I don't remember what the first number was earlier, but the second number was in the 30s, consistently. So, it is improving. They have pain meds and anti-nausea meds on board, she has an arterial line and all seems okay.

It is now 4:30pm, so I'm going to wrap this up for today. Hopefully, the next few days and nights will be smooth and uneventful. 

Thank you for reading - thank you for the love!

Christy xo

Pre-Op Day

What a long day.

We are beat.  I think Harlie fared better than we did.

Our first appointment was in Pre-Op/Admitting at 10 o'clock.  They did the basics - weight, height, temp and blood pressure.  Then we spoke to a nurse at length about Harlie's history, current status, etc.  After that, we spoke with an anesthesiologist.  She asked why we didn't do a heart cath first.  She was a little concerned about her cardiac situation.  But I explained that it doesn't work that way.  We don't have a choice.  The hardware has to come out first.  And we are here and Harlie is healthy.  I don't know what's going on with her heart and lungs - but she is NOT sick.  So, she sent us on to our next stop - admitting.  Tom handled that one while I sat with Harlie.

It was noon by this point and we had an hour till our next appointment - cardiology.  So, we went down to the cafeteria and got some lunch.  There we ran into Julie, a nurse we used to have when we were at Children's National in DC.  I saw her when we were here this summer, too.  She moved to Boston and now works here.  It really is a small world!  Anyway, it was so good to see her friendly face!

After lunch, we headed up to cardiology.  There she got an EKG, a pacemaker check and we met with her cardiologist who had us this summer.  I find him to be very easy to talk to and compassionate about her and all we have on our plate.  I brought him up to speed on what's been going on with her.

Unfortunately, the conversation wasn't great.  We won't know anything for sure until she gets this darn heart cath.  But, his thinking is that it is not likely to be a simple thing as a collateral vessel(s).  He explained why and it makes sense.  It also is in line with what her local cardiologist has said for years.  Which means that her heart may not be the cause of the oxygen requirement. That will send us back to pulmonary, which means we have to go back to the beginning.  That's where I started my questions last year.  And we never got answers.  She is just so complicated.  Her heart function - the Fontan, is less than ideal, in a kid with normal lung function.  Add her less than ideal lung function to the less than ideal Fontan function and what do you get?  Plus, he said that she could be micro aspirating, which, over time could cause lung damage.  So far, we've never seen any evidence of aspiration, but what the hell?  I suppose she could be.  Nothing about her makes sense, so why not?  But, we've done x-rays, a CT scan of her lungs in June and we are now doing Vest treatments.  I really don't know what else we can do.  Except leave Richmond for pulmonary.  Which I do NOT want to do.  But, I will, if I have to do.

But, I'm probably getting ahead of myself.  We have to take one thing at a time.  But, for now, Tom and I are feeling very heavy.  I don't want this to be a sign of something horrible.  But, the oxygen requirement for almost a full year, the struggle her body had with surgery in July, and then again in August, the addition of Lasix to her daily routine, and then an increase of Lasix every other day, means that we are going in the wrong direction.  Things are getting worse.  And there's nothing I can do to stop it.  I don't understand what's going on, and neither do her doctors.  There's absolutely no comfort in that.  And we have to wait at least SIX weeks for her heart cath!  How am I going to live with this worry for six weeks?

After that appointment, we headed over to Plastics to see her plastic surgeon, Dr. Padwa.  We didn't know how to get there from where we were.  I know how to get to Dr. Padwa's office, but I have to start from a certain place.  Anyway, we bickered about being lost, where to go, etc.  And it was very obvious that we were feeling very tired, and sad, and worried and that's just the way all that stuff comes out - being crappy to each other because there's no one else to do it to.  Luckily, we are not new at this, and we realize what's happening.  So we stop it somehow.

We went to Dr. Padwa's office and met with her.  That went well.  No heavy conversation there.  She thinks Harlie looks great.  And things are so much more improved than when we saw her last.  Harlie is swallowing and her mouth closure is much better.  They got some mouth x-rays and some pictures.  That sounds easy, but it wasn't.  Keep in mind it was well after 3 o'clock by then and we were all so tired.  And trying to get Harlie to look at us and hold still, etc. was a lot of work.  And I can't even say we were successful.  I don't know, maybe.  They said she did well, but all I can tell you is that I was done.  Then we went back towards cardiology to get chest x-rays.  We would have done it while we were right there (they are next to each other) but, we didn't have time.

Here's what she looks like underneath it all...

You can clearly see the hardware in her jaw that will be coming out on Wednesday.  Isn't it crazy?  Oh, my poor sweet little girl.  There is so much going on in her little body.  It makes me so sad sometimes.

Here is a side view...

After that we were DONE.  Luckily, her cardiologist didn't make her get another echo.  And come 4 o'clock (it's scheduled time) I was so, so thankful.  There is NO way she would have been cooperative for that.  And Tom and I did NOT have the energy to help her through it.

We left the hospital after 5 o'clock.  We walked those halls for seven hours, pushing her, and pulling her oxygen, both of us connected by tubing.  Weaving through the halls, and waiting rooms, going into restrooms and exam rooms with that oxygen in tow is exhausting.  I hate to sound like a wuss, but that oxygen changes everything.  And I'd like to think I'm somewhat physically fit and energetic.  Yet, it kicks my ass.

But, in those seven hours, we really never had to wait.  And if we did, it was for a very short time.  Our day in a nutshell:

1.   Spoke with a pre-op nurse.  Got vitals and discussed meds.
2.   Spoke with a different pre-op nurse. Went over history and discussed meds.
3.   Spoke with a pre-op anesthesiologist.  Went over current issues and discussed meds.
4.   Admitting, gave insurance info.  That was easy.
5.   Had lunch
6.   Got an EKG, completed paperwork about her meds.
7.   Got a pacemaker check
8.   Met with her cardiologist
9.   Met with her plastic surgeon
10. Got panoramic x-rays and various photos
11. Got chest x-rays
12.  Realized Tom left his cell in Plastics, so he had to go back and get it

Walking all over the hospital and then discussing Harlie's history, meds and current issues, over and over again - is EXHAUSTING.  But each specialty has to know that the information they are looking at is current and accurate.  So, I get it.  But, it's still exhausting.

Then we left the hospital and went across the street to get some coffee.  Tom went in to order and I stayed outside with Harlie.  Those are the things you have to do when you're lugging an oxygen concentrator around.  Some places are just too crowded for our wide load.  Anyway, while I was standing outside with Harlie, it took all my strength not to burst into tears.  There was a girl standing there asking everyone who walked by if they wanted to discuss the Syrian refugees.  No one wanted to, in case you were wondering.  And I couldn't help but notice that I was standing just a few feet away from her, planted in my spot, and she never asked me.  Funny.  I guess she could tell that I had enough of my own problems to worry about.  Then Tom came out and we walked back to the hotel.  Tom went and got us dinner and we ate it in our room.  Now we are waiting for the baseball game to start.

There is a lot on my mind tonight.  But, somehow we'll get through.  Harlie is happy and that's what's most important.  She was so good today.  She really is a good kid.  And I don't know how or why.  She has every reason not to be.  For now, I thank God that she doesn't understand all of this.

Thank you for all your love and support.  We are feeling it tonight, and we are so thankful.  Also, I want to thank my neighbors, Jasmine and Soloman for having the boys (including Rooney) over for a sleepover with their son on Saturday night.  And my sister, Sandy, for hanging out with them on Sunday and taking them to see a movie (coincidentally, Cloudy with a Chance of Meatballs 2).  And Brandy for staying at our house on Sunday night and getting them off to school this morning.  And, of course, Bethany for keeping the boys and Rooney this afternoon after school until Grandma and Pap Pap got there to take over for the rest of the week.  Whew!  It really does take a village...

Tomorrow is our day off and we are all looking forward to it!  Thank you again!

Much love,
Christy xo

Pre-Op Day

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

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

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

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

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

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

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

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

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

Okay, enough seriousness...

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

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

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

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

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

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

Here's to you, Lynda!

Blueberry beer.  Yum!

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

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

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

Here's the gist...

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

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

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

  

Or this...

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

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

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

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

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

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

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

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

Whew!  Are you tired of reading about this yet?

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

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

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

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

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

Then they took some pictures of her and we left.  

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

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

That little sneak!  

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

Crazy.  

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

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

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

~Christy xoxo

Post-op DONE!

Whew!  IT'S OVER!!! WOOHOO!!

We arrived at radiology right on time - 7:30am.  I'm only going to hit the highlights.  Because to be honest - I am beat!

After a lot of waiting and lots of questions a doctor came in to talk details.  She said that combining a non-radiology procedure (dental impressions, in our case) with a CT scan is unheard of.  She wanted me to know and understand that they were making an unprecedented exception.  In all of her 17 years here, it has never happened.  And I get that.  She said they get requests all the time to add different things to a radiology procedure to take advantage of a child being under anesthesia - but they always say no.  They have to.  Otherwise they would turn into a mini-OR and they would get so backed-up since all the machines are already booked as it is.

So, I guess this means that we're somewhat special.  For a second, I'm like, "wow, that's pretty cool." And then the reality of that sinks in, and I think, "Wow, that really sucks."

I'll try to make this simple...

She wanted to go with an anesthetic that I had never heard of (not that that means anything, really) and  can't remember what it was called now (started with a P).  The negatives were that the medicine would linger in her system for 48 hours, it would not relax her muscles like general anesthesia and that kids tend to be more agitated when they wake.

Way to sell it, Doc!

Um, no thank you!

In her defense, the reason why she wanted to go with that particular anesthesia is because it is less risky than general anesthesia.  Especially considering they didn't know her and she is a complicated kid - heart wise (and otherwise, but in that situation, her heart is the main issue).

My problems with that were:

1.  Her muscles (specifically her jaw muscles) need to relax enough that they can get the dental impressions.

2.  At that time, we had another appointment in the afternoon and then I have to put her on a plane tomorrow.

3.  She's been under general anesthesia more times than I can recall - more than 30 - and we've always been perfectly fine.  Her one risky episode was not anesthesia-related.  It was infection related.

My thinking was that it was actually more risky to NOT do general anesthesia - in the big picture, I mean.  The dental impressions were a must.  Period.  If she went under and they were unable to get them, we'd be screwed.

Not only would she have to go under general anesthesia in the very near future anyway, we'd have to rearrange our flights, and it would be a general nightmare.

Not worth it.  Especially considering I had never heard of that med before so what if she had a reaction?  Go with what you know or what you don't?

I hated to do it - but I had to put my foot down.  And I know she was annoyed.  And I can understand her view point.  She's been through many years of education, she's probably super freaking smart, she makes a ton of money and the bottom line is that she knows WAY more than me when it comes to this stuff.  And I'm a stay at home mom.

However, she does not have the big picture in mind.  And she will only have to deal with Harlie, and the  consequences of these decisions for a short time.  And, she just met her.  And I know her better than anyone should know anybody.

Maggie said that during our talk I said something and bent down to get my notebook from my bag when the doctor looked at her co-worker (I have NO idea who he was or what his position was since he did not introduce himself) and gave him this "look" like "oh brother" or something.

I know I wasn't wrong in my standing.  But it still stings to think someone looked at me and thought something not positive.  Especially when I work SO FREAKING HARD to do the BEST thing for my wonderful daughter whom I love more than life itself.  Just look at her already!

Two things really put me off -

1.  She asked me why we've spread our care all over the place (Norfolk, Richmond, DC and now Boston, MA).  To me, I think the answer is really obvious - because I freaking have to, that's why.  Same reason why I do a bunch of other crap I hate.  I can guarantee you it's not because I'm bored, have too much time on my hands or that I WANT to.  For crying old loud.  Something about the way she asked me that made me want to come out of my skin.

2.  She asked me why they want dental impressions.  Really?  Does it matter?  You just told me that combining procedures was a first in your 17 years.  Do you think it's not absolutely necessary?

After I told her I just wasn't comfortable trying a new med this visit, she left the room.

And I just need to say that doing this and standing my ground, or arguing my point, does not come easy.  You'd think it does since I am advocating for Harlie - but it doesn't.  So, if you're reading this and think you'd be all Mama Bear or something - unless you've been in these shoes, you can't say.  Doctors have this air about them.  And I would venture to say that most people think they (the docs) know better - so I really don't think arguing comes naturally.  At least it doesn't to me.  I'm a "can't we all just get along" kinda girl.

Anyway, the bottom line is that they went with general anesthesia.  And then the doc came back, she was super nice.  Maybe she thought about it and understood my point.  I made sure that I thanked her and let her know how much I appreciated her making the exception for Harlie.  Because I really do.

So, the dentist came in and got the impressions.  He came out to the waiting room to tell me that it was done.  AND THAT SHE LOST A FREAKING TOOTH!!!  UGH!

Maybe this shouldn't bother me as much as it does.  But I am SO over her losing her teeth before they are ready to come out.  Enough already!  I've officially lost count of the teeth that she has lost while in the hospital.  It really is the little things that hurt the most.  


He also said that they wanted to put some sort of retainer in her mouth post-op to help things progress - but that he thought that was unlikely.  He said her mouth is just too small.  There's simply no room in there for anything else.  Sigh.  Her jaw abnormality is severe and as much as I try to believe it's fine, it's not.  It's severe.  And that's that. 


For now.  


I still have hope we can turn things around for her. And the surgeons seem to, too.  If you have some good connections with the Man upstairs - feel free to pray!

Oh, and I can't remember why - but the doc wanted her to have an IV before she went into the CT scan room.  We originally said that they would get an IV after she was under.  They just hook up the vent with sleepy stuff to her trach and "night-night!"  I really don't know why they couldn't do the IV afterwards.  And maybe I should have argued that, too.  But, I didn't want to push my luck.

So, bring on the torture.  Thank goodness the nurse got it in one stick.  Woohoo!  Although Harlie fought like nobody's business.  She almost head-butted me and I can tell you that it would have HURT. She was really fighting hard!

The CT scan took forever.  They wanted to confirm what the surgeon wanted, so he had to be called out of surgery.  Oh!  And I got a kick out of this...

I knew that she was going to have some blood work later in the day so I told them they had to get what they needed while she had an IV.  So, they did.  Although she fights anything having to do with touching the IV.  She's insane.

After that we went to wind down for a little while till we had to go to our next appointment.  They have this garden area and there was live music and and it was really nice.  The weather was awesome.  Not too hot and sunny.

This is such a nice hospital.  I love it.

After that, we went to pre-op.  I was thinking we would be done relatively quickly.  We had already met with cardiac anesthesia (since they had to do general anesthesia) and they already took blood.  So, there wasn't much else left.  If we got out of there early enough, we were going to go back down towards the aquarium and let Harlie ride the carousel.

Boy, was I wrong!

One of the blood samples clotted, so they had to repeat it.  UGH!!!!!!!!  I made them justify that they absolutely, without a doubt, needed it today.  They seemed sympathetic.  But it still had to be done.

After all questions were answered (10 times per question at least for each specialty and department), we headed on over to the lab.  Harlie was fine until she got called back and saw "the" chair.  She knew what was going down and she was not happy about it.  She started to cry and it broke my heart.  It didn't help that I had to be the one to pick her up (against her will) and put her in my lap and then bear hug her to hold her down.

It took 5 adults.  And two attempts.  We were all sweating and the room (which was tiny) was hot as hell when we were done.  One of the nurses grabbed some paper and started fanning Harlie.  Something about her doing that touched me.  It was a very sweet gesture, and did not go unnoticed.  I HATE holding her down like that.  But I hate the thought of someone else doing it more.  In my mind I am hugging her.  Really, really tight. And I hope that she thinks that, too.

After that... we were DONE.  Hallelujah!

Of course it was after 4pm, and there was no way in hell we were going anywhere.  They have a playground there and I asked Harlie if she wanted to play on it.  She said, no.  So, we went back to the hotel.

I left Maggie and Harlie relaxing, watching tv, while I walked to the nearest liquor store.  I'm sorry, but I had to have a drink!

It is now almost 10pm and Harlie is still awake.  I don't get her at all.  She's had such a rough day.  Why isn't she sleeping????

We are almost packed.  I packed everything I can for now.  I want to go home.  And so does Harlie.  She misses her Daddy (she has signed for him everyday).

It is daunting to think that we will have to come back.  And learn a new ICU and new nurses and doctors.  And then leave.  Just to return again.  And again.  And again.

I hope that we've made the right decision and picked the right team to turn our lives around.

Okay, I have GOT to go.  I'm beat.  We have an early morning tomorrow.  Thanks for all your thoughts and prayers this week.  They were very much appreciated!!!  We couldn't survive this without your support!

Much love,
Christy xo

First appointment down

More adventures in Boston...

Sunday

We took our time getting started on Sunday morning.  Once Harlie was up, she started signing "fish" -she clearly wanted to go to the aquarium.  So, off we went.  We stopped at the front desk to ask them how to get to the "T" (train).  He told us to take a right out the doors and to follow the family that just left - because that's where they were going.

Once we were on the "T" the little boy in that family said, "So, you're staying at the same hotel we are."  I told him yes.  And then he told me that he is having surgery at the Children's Hospital.  I told him Harlie was, too.  He asked why and then told me why he was having surgery.  He was eight.  It was really cute to have that conversation with him.  It made me wish Harlie could have a conversation, too. At her age, she'd be able to talk to him about it, which would be really cute.

Anyway, we took the Green line to Government Center, where we switched to the Blue line and then got off at the aquarium.  We went to go stand in line and within seconds an aquarium employee came up to me and told me that we could skip the line and go straight into the building.  What?!  So, I thanked her and we headed on in.  Totally awesome!  Then they let her in for free!  Wowza!  Things were really looking up!

We walked all through and the kids had a good time.  I don't think I'm supposed to upload a lot of photos because I'm using a wireless card or something (not tech savvy over here) so I'm going to have to post photos later.

After the aquarium, we walked over to Fanueil Hall, which was pretty cool.  They have a Crocs store and Harlie needs a new pair.  So, we went in there and she flat out REFUSED to try any shoes on.  Which is really weird because she loves her Crocs.  Which might explain why she didn't want to try any on, now that I'm thinking about it.  They didn't have the ones that she has at home (I think they are getting too small).  Interesting.  And annoying.

Anyway, after that we went on a Duck Tour, which I thought was awesome.  I know the girls didn't appreciate all that the driver was saying, but Heather and I thought it was very interesting.  And the driver was pretty funny.  After the duck was in the water, he asked if anyone wanted to drive it.  So, Mallory and Harlie got to drive it for a little bit.

We were supposed to meet up with a friend of mine from high school, but unfortunately that didn't work out.  My brain wasn't as sharp after all the walking around we did and when we were figuring out the times of when we had to be where, I messed up.  Ugh.

After the duck tour, we headed back to the T to go back to the hotel.  It was a little after 8pm by then, and the girls were worn out!

We got on the Blue line and headed towards Government Center again.  We checked the map and found "Longwood" and took the Green line that would take us there.  I have to admit that Heather and I were pretty darn proud of ourselves for all of our navigation.

By this point, it is after 9pm and it is dark outside.  So, we get off at the Longwood stop (which is an outside stop) and I immediately set up Harlie's chair and get her in it.  While I was doing that Heather said, "Christy, I don't think this is where we got on."  I stop and look around.

Chirp, chirp.  

The station is almost empty (there is one guy on the other side of the tracks waiting for a train) and the street is dark.  And Heather is right.  It is NOT where we got on the train that morning.

We look at the map and realize that there are TWO freaking Longwood stops.  One is just "Longwood" and the other is "Longwood MEDICAL."  Great.  I know exactly what we did.  We were tired.  We looked at the map, found Longwood, and stopped looking, so we never even saw that Longwood Medical was a different stop.  On a different line.  So, getting back on the train really wasn't a good option.  That would have cost us a lot of time.

We look down the street to our right.  Pitch black.  No city lights in sight.  Just a bunch of trees.  We look down the street to the left.  Exact same.

And then Mallory yells, "ARE WE LOST?"  Both of us shush her immediately.

We can see from the map that the Children's Hospital appears to be in the middle of the two Longwood stops.  So, it looks like it's not that far to walk it.  But, what are we walking through?  We didn't know the area at all.  Was it safe?

Heather pulls up the GPS on her phone and we decide to try walking for a little bit.  Within just a minute or two we got up the hill and then civilization!  Woohoo!  And we walked straight "home" to the hotel without incident.  And - just to note - it was actually a more direct and quicker route than the one the hotel staff recommended that morning.  Nice.  Thanks, a lot guys!

So, on our way back, we got to explain to Mallory why you don't shout, "ARE WE LOST??!!" in an unfamiliar place.  At night.  Mallory now knows the meaning of the word, vulnerable.  And then Heather and I were proud of ourselves once again for figuring things out.  We're awesome.

The girls fell asleep and Heather and I stayed up into the wee hours drinking wine.  Again, laughing and talking and having a blast.  Oh, and eating a bunch of cold pizza and candy.  It was a great day.

Monday

We got a really late start to Monday.  We took the T back to the aquarium area.  It was lunch time and we were hungry.  Heather wanted to try a Lobster Roll.  So, Tom found the Yankee Lobster Fish Company and said we should go there.  Unfortunately we had to take a cab.  But it was good.  And then we headed back towards Fanueil Hall (near the aquarium).  We walked along the shops and since I am pretty stubborn, too, I took Harlie back to the Crocs store to see if she was in a better mood to buy some new shoes.  Nope.

Then we headed back to the hotel for our 4pm appointment with the oral surgeon and another surgeon.

Heather's flight didn't leave till 8pm, so they went with us to our appointment.  And I think that had to have been fun for Harlie.

4pm Pre-op consult with Dr. Padwa and Dr. Taghinia

I'm going to try to brief, because it is now 11:50pm and Harlie JUST fell asleep and I am struggling to keep my eyes open.

The highlights are:

1.  I really liked both doctors.  We had a comfortable conversation with laughing (which always wins me over).

2.  Dr. Padwa (oral surgeon) thinks she might wire her mouth shut for a few weeks.  But she won't know for sure until she gets in there and sees how things look and how things go.

3.  She examined Harlie's mouth and just with a little bit of touching, Harlie gagged a little.  She is a little concerned that Harlie won't be able to tolerate getting the dental molds tomorrow.  This was my worry, too.  So, if it doesn't work tomorrow, they are going to sedate her for the CT scan on Wednesday and do it while she's sedated.

4.  Dr. Taghinia will be working with Dr. Labow to harvest the bone and vascular tissue from her fibula.  I asked if they are going to take a vertical sliver or slice from her fibula.  And he said, no.  They are going to take a section of the whole bone from the middle of her leg.  So, they are going to cut her bone in two places and take the piece from the center. I asked if they are going to replace it with anything.  And he said, "No."

WHAT?!?!

So bone will go down from her knee and will just end.  And bone will come up from her ankle and just end - without the bones touching in the middle.

Isn't that crazy?!?!

Apparently that is not a weight bearing bone and we don't really need it.  But it still seems pretty freaky to me.  I can picture those x-rays now...

5.  Her leg will be casted for a few weeks and she will not be able to bear weight.  So, that should be fun.  Have I mentioned how much I love her new stroller?

6.  Just in case you're curious (as was I) they take turns taking breaks to eat, drink, etc. during the surgery.  It will last 10 hours, give or take.  I told them I did not want them to be distracted by their hunger.  It was actually a funny conversation.

7.  After we covered all the info, Dr. Padwa asked how I was doing.  Nice, huh?

Then we left.  We stopped to get Heather and Mallory some dinner before they had to head to the airport.  Then we went back to the hotel, Heather packed and we all headed to the T station.  In the meantime, my friend from high school (Mike) was on his way to meet me for dinner.  On our way to the Longwood stop, we met up with him.  Then we had to say good-bye to Heather and Mallory.

I am so thankful for them coming up this weekend.  We all had so much fun.  And I think Harlie and Mallory got to bond a little.  They were actually very cute together.

So, then me, Harlie and Mike went to dinner.  It was great to catch up with him.  Thanks for dinner, Mike!

So, you're all caught up now.  We have to be at the hospital at 10am for our first appointment.

That's it!  More later!  Thank you!!!
~Christy

Pre-Op Day

We went to DC on Thursday for her pre-op appointment.  It was fine.  Traffic up there wasn't that bad, which always makes me happy (yeah, it doesn't take much).  We met with a cardiac anesthesiologist (CA) - the one that was with Harlie when she was transported from Washington Hospital Center right after she was born.  She told me that she remembered Harlie from then (which I think is amazing considering how many kids she's seen over the years).

Anyway, she said that a CA and an ortho anesthesiologist (one that is very familiar with spinal fusions) will be working together on her case during the surgery.  I am very happy about that.  She will go to the CICU (cardiac intensive care unit) immediately after surgery.  But after that, we're not sure where she'll go.  She will either go to the HKU (heart and kidney unit) or the ortho recovery unit.  They will have to see how she's doing cardiac-wise to figure that out.  Should she be cared for by heart nurses or nurses that know spinal fusion surgeries and body casts?  I can't help but think that if she is stable cardiac-wise that maybe ortho nurses should care for her.  But, we'll have to see what the team thinks at that time.

At some point during our conversation she said that if a doc were to read Harlie's medical history and then meet her - they would not think they were the same person.  I just love hearing this.  It really goes to show how incredibly strong she is and how hard we have all worked to get her this far.  And by all - I mean everyone that's worked with us to help her.  Harlie's team of professionals is a large group of wonderful people that includes her nurses, therapists, nutritionist, teachers, etc.  One day I want to write something like "Meet Harlie's Team" or something with pictures of them.  I just think they are such wonderful people for doing what they do everyday.

It's really weird how I think she's doing so great and we are getting closer to normal as the years go by.  She's just a little girl to us now.  But, to them she is a complex medical patient.  It's just a weird transition to make as we go into another hospital stay.

Anyway, as far as details of the day go:

Surgery is scheduled for 8:30am.  We have to be there at 6:30am.  Harlie's ENT will go first and will work on her ear (in desperate need for that!) and put a new tube in.  This will be her fourth.  And the last time he put in a "t" tube that is supposed to last years - hers still only lasted less than a year.  I'm not sure what, if anything, we can do about the fact that her ear won't hold on to tubes.  It's frustrating because we really have to do everything we can to take good care of that ear - it's the only one she has!

Then he will do a bronchoscopy.  This is a really big deal this time.  It will be her first bronch since her last jaw reconstruction surgery in December 2009.  It has been well over a year since, so it's pretty safe to say that her jaw isn't going to recede anymore than it has.  And she's been doing great wearing her PMV (speaking valve, which allows her to inhale through the trach, and forces her to exhale out her mouth and nose) most of the day, on most days.  She's even learned that she can still cough while wearing one.  And sneeze - which is the cutest sound EVER!

So, I have high hopes that her airway is free and clear and is no longer obstructed by the base of her tongue.  This is the first time I've felt this way.  And it is a little scary.  Daydreaming about life without a trach is dangerous.  I'd rather not go there if we're still years away.   At this point, I would just like to be able to talk about it with her ENT as being a possibility in the near future.

On the negative side - if he comes out and says that her airway is NOT free and clear of the obstruction, I will be devastated.  Not that I've gotten my hopes up (even though I have) but because that would mean that two jaw reconstructions haven't worked enough to get that trach out.  I know she needs another one anyway (her jaw is very asymmetrical and chewing would be very difficult).  But if two didn't work, then who's to say that a third would?  Too scary to think about.

So, they said he needs an hour, so hopefully we'll know something by mid-morning.

After he's done, her ortho surgeon will start the spinal fusion surgery.  I think they told me that will take four or five hours.  So, it will be a long day.  This time we'll have internet access (YAY!) so I'll be updating the blog throughout the day.  It's a good stress reliever for me.  I'm not sure what it does for you.

So, after we were finished discussing the day and her history, we went down to the lab.  They didn't need to take that much blood (which is great).  But they are going to have two liters on hand during the surgery because they said that bone bleeds pretty heavily.  Yuck.   We got Albert - we've had him before - and he's really good.  He got her on the first try and without having to put the tourniquet on in six places first.  He put it on, and stuck her and it was done.  She hasn't gotten that if she stays still it will be over quicker.

Brandy holding Harlie during a blood draw.

After blood work, we were done.  It was about 2:00 I think.  Since we were there at lunch time, and we were HUNGRY I went to the cafeteria to see if they had anything interesting.  But, I couldn't do it.  We will be eating there more than I will like this week.  So, we stopped on our way home.

Harlie rode the whole way home with her right hand behind her back, as if protecting it.  Then we got home, and she walked around and watched a movie like this...

She didn't move her hand from behind her back until bath time that night.  Oh, if that's how she feels about one blood draw - I don't even want to think about how she's going to feel about wearing a cast!!!

Well, that's it for the day.  That night I went out with my girlfriends.  But, more on that later.

Thanks for reading!
~Christy

Back to DC for Pre-Op

Today is pre-op day in DC.  They will take some blood (dreading that, of course) and we'll meet with anesthesia.  Hopefully it won't take that long.  I'd like to be back home by mid-afternoon.  We'll see.

So, Monday was scheduled haircut day.  Yay!  I'm totally digging this!  Kim came out again and cut all the kid's hair this time.

Cooper finally realized that haircuts don't hurt.  YAY!  So, he was great and it was a totally different experience than having him cry and fight the whole time.

And here's what Harlie's looks like from the back.

It was getting long again and I think she looks better with her hair short.  And it is SO much easier for trach care to have it off her neck a little.  Especially considering she'll be in a cast and we won't be able to do much with it anyway.  I might even have her go shorter next time.  I think Harlie likes it better, too.

I am loving having Kim come out to our house.  She comes at 3:00, and on Monday Harlie had a doctor's appointment at 4:10.  She cut all their hair and then I took Harlie to the doctor - no problem.  Sweet!

I have to go and get ready for the day - but I wanted to share one more thing...

I was thinking about our trip on Sunday to DC and the fact that I would have to pack a ton of stuff for Harlie to sleep for one very short night at the Ronald McDonald House.  So, I thought maybe we should try having her sleep in an HME (heat and moisture exchanger),

which would mean we would have to take WAY less stuff.  I had read that some kids sleep in the them instead of using a trach collar with the heated humidity system, which involves an air compressor (makes a lot of noise) and a heater and a bag of water.  She's not on oxygen - regularly - anymore.  So, the other night we tried it out to see how it worked.

Here's the heater, trach collar and bag on the IV pole and all the tubes are connected to an air compressor and oxygen concentrator down the hall...

We love it!  She is no different in the morning than usual (the mornings are always junky with lots of suctioning from her laying down all night).  And the night is SO much quieter!  What a difference!  Plus, I really think that she is more comfortable.  She is so hot-natured and to have that hot air blowing on her neck all night had to have been a little uncomfortable.

For some reason, having her sleep this way feels so freeing for us.  It just seems a smidge closer to "normal."  I don't know why, it just does.  And we are so excited about it!

Okay, time to run.  Lots to do... Have a great day!
~Christy

Ortho Pre-Op Info

The pre-op appointment with the ortho surgeon went fine.  She answered all my questions.  Here's the deal:

Surgery:  Spinal fusion and removal of vertebra in lumbar spine plus ear tube placement and bronchoscopy

Date:  March 28th

Length of stay: 4 to 6 days - give or take

Cast:  Pantaloon, from just below armpits to mid-thigh, on left leg only.  The right leg will be cast-free.  A hole will be drilled on the left side for her g-tube (which is good, because that is the side with the most cast).  The left leg will be bent slightly at the hip.  So, she won't be completely horizontal, which is great.    But, I have no idea if that slight bend will be enough to get her into a reclining car seat.  So, we'll just have to see what they say then.

She might come out of the OR with NO cast.  It will depend on how her body does during the surgery - meaning how her heart and body do under anesthesia and how long she's under.  If they have to give her a lot of fluid, then they will have to wait a few days to let her settle down before casting her.  If she comes out without the cast, they will have to keep her pretty heavily sedated to keep her from moving around.  I really hope this isn't the case.   In July, after her 4th heart surgery, even though she was completely "loaded" with every narcotic, pain medication and sedative around - she STILL sat up in bed just hours after surgery.

Brace: might be an option after the first month.  She said she will have a more specific plan after the surgery when she knows how much work she did and how she thinks it went.  The problems with a brace are 1) she is very active and 2) a brace doesn't fit as well as a cast, which can lead to problems during recovery.  She said she would rather not do a brace for those reasons, but if Harlie isn't tolerating the cast, then perhaps after the first month, a brace might work.  We'll see.

Activity:  The surgeon said that she can weight bear - which totally shocked me.  Personally, I don't see how in the world she could manage the extra weight of the cast - especially since it will be considerably more heavy on her left side.  She would certainly have to be very supported - but perhaps we could do that with her old walker.  I would imagine she would have to hop a little on her right leg - which she can't do now, much less with the cast.  I guess it will come down to Harlie's desire and determination.  I'm pretty anxious to see what she'll do.  But the thought of her falling while in the cast makes me cringe.  So, I'm not sure what I'm going to be comfortable with her doing.  Again, we'll just have to see.

Follow-up Appointments:  None, unless we are having issues/problems.

Incision:  I'm certainly a little nervous about there being an incision under a cast that we can't see for 4-6 weeks.  And she also said that she will have to have a bone graft of some sort when she puts everything together after removing the abnormal vertebra.  In my head I screamed, "BONE GRAFT?!?!?"  ACKKKK!!!! (You might remember the last bone graft experience we had.)   But, in reality I, very calmly, but with a look of concern said, "Bone graft?" Then she said, "If it gets infected, she'll get a fever and we'll know."  Ha!  If only Harlie was that normal.

Future Growth:  Unfortunately, she said she can't do anything to save the growth plates in the area she's fusing.  Once they are fused together, they won't grow.  That is the very unfortunate part about doing this surgery at such a young age.  She still has a lot of growing to do!  So, she will be short waisted - her lumbar spine will be down a vertebra and then two will be screwed together.  So, that's a bummer.  But, something I expected, nonetheless.  Waiting longer will just make things harder/riskier to fix down the line.

So, overall it was a good appointment.  And it was relatively quick - just under two hours.

I was so bummed I forgot my camera.  I would have loved to show you how darn cute and funny Harlie was when she was getting x-rays.  They took a bunch and Harlie was SO good!  She can now stand all by herself - STILL - while they take them.  She follows instructions as to how to stand and where to put her arms.  And she smiles when doing it - like she's having fun!  I think she thinks the light shining on her is funny.  I don't know.  But, it's really funny to watch.  The only ones that we had to struggle with was when she was laying on the table and her hips had to be straight, but her upper body had to lean to the side.  She didn't like that one at all.  Maybe it was uncomfortable for her.

Oh!  During vital check the nurse put a pulse ox probe on her finger.  It read her oxygen saturation percentage at 86% (which is great for her - that number is between 95-100 for a normal person) and her heart rate in the 80s I think.  Well, he looked up at the monitor and said, "It'll level out here in a minute." And so we waited.  It finally dawned on me that he was thinking/hoping that her sats would get higher.  So, I said to Brandy, "Wow, 86, that's great".  And he said, "oh, that would be very bad".  hehe  So, I had to tell him that number was not going to increase any time soon.  We'd all die of starvation waiting for that to happen.  Ahhh, I don't know why that makes me laugh.  I must have a sick sense of humor.

It reminded me of when Harlie was just a few months old.  Back then we were establishing Harlie's doctor list, so the nurses didn't know her yet.  And they would always try to look so calm when asking me, "So, what are her sats normally?"  And then I would tell them, "In the 70s and 80s".  And they would say, "Oh, Thank God!  She had me scared!"  It cracked me up every time.  Weird.  I know.

So, that's it.  Okay, more later!
Thanks!
~Christy