Wednesday, July 31, 2013

How we are doing...

I know I haven't posted in a while.  I have a hard time posting when things aren't good.  I like to be positive, and I really don't want to complain.

But, things have been tough.  And that's just the way it is.  I know it will get better.  It has to.  But, for now, it's hard.  Really hard.

Here's the deal:

1.  Harlie is gagging on her own secretions.  A lot.  It's awful.  I feel so badly for her.  She is now carrying around a bowl with her to spit her stuff into.  I am so thankful for her nissen right now, because she would be vomiting all over the place if it weren't for that thing.

2.  The sounds she's making are not her normal sounds.  So, the sound she made to indicate she needed suctioning, sounds different.  So we are all re-learning what her sounds are and what we need to do when we hear them.  While we should have learned this by now, I am having a hard time with it.  I just am.

3.  Her mouth is a MESS.  Seriously.  It's also probably partly to blame for all the gagging.  I think she's gagging on something - like mucous?  Or a growth of ... something.  While it is a wonderful thing that she can open her mouth wider than she's ever been able to before - it does have it's drawbacks.  We can now see what we've never seen before.  And, quite frankly, God love her, it ain't pretty.  So much so that it physically hurts me.  I am seriously tempted to show you photos of what I'm talking about.  Her mouth is .... all effed up.  Period.  I ache for her.  I think of all the things that hurt typical people - wisdom teeth, cavities, braces, ulcers, etc. and none of them hold a candle to what's going on with her mouth.  It's awful.

4. Her gums are bleeding on the bottom left.  At least that's what I think is bleeding.  I mean, what else could it be?  Is a tooth moving because the environment has changed?  I have no idea.  Is a new tooth trying to come through?  What the hell is going on in there?  I don't know.

5.  Her shoulder hurts.  The right one.  Odds are it has something to do with the nerves in her face and neck and pain must be radiating down into her shoulder.  What do I do about this?  I have no idea.

Since my last update, Harlie's had a few doctor's appointments.

Last Wednesday, she had an appointment with her local cardiologist.  I needed him to check her pacemaker settings since they messed with them in Boston for her surgery.  I just wanted to make sure all was set how he wanted.  So, that meant we had to go to his downtown office.    Harlie was still on oxygen.  And our nurse couldn't go with us to the appointment.  And I had to get care for the boys.  Honestly, just thinking about taking her to this appointment alone, and having to park far away and walk her to the building with oxygen, made me want to cry.  So, I called my parents.  My mom had a prior commitment, but my dad was available.  So, he came to my house and drove me and Harlie downtown in my car.  He dropped us off right at the building's door.  Ahhh, thank God for parents!  Then, when we were done the appointment, I called him and he came right over to collect us.  So, so thankful.

The appointment went okay.  I asked him about Harlie's heart and why she moves so slowly (there is always a huge gap in the line at school because she can't keep up with the class).  I see other heart kids on Facebook all the time who are swimming and running and playing and biking, etc.  Why can't Harlie just walk around the block for crying out loud?  Or keep up in line?  I know her heart is different.  But, what can her heart really do?  Is it capable of allowing her to live life a little more like a regular kid?

He doesn't really know.  There aren't a lot of kids out there with her crazy heart and less lungs like she has.  He thinks both her heart and her lungs (and maybe even her spine since she's been complaining about her back a lot lately when she walks) are to blame.  We can do a stress test in a few years to see if we can try to push her to build up some endurance.  But, honestly, that has to be a back burner item for now.  We have bigger fish to fry right now.  Which always seems the case... All of it just makes me sad for her.

After our appointment, I took Harlie down to the main lobby to wait for my dad.  I went to tube her some water and she made such a loud fuss (the people around us looked at me like I was killing her) that I seriously could not tube her!  I think she's been touched so much in a negative way and had no choice but to just live through it, that she is trying desperately to get some control somewhere.  I had to wait until we got home to tube her.  Which, of course, put us off schedule for the rest of the day.  Small potatoes in comparison.

The next day (Thursday) she had an appointment with her pulmonologist.  Back downtown we went - but to a different building.  And I had Terri with me.  We were running late, as usual (mornings are so rough!) so I dropped Terri and Harlie off at the door and I went to park.  That way Terri could get her checked in right at her appointment time (9am) since I knew it would take me a good 15 to 20 minutes to park the car and walk to the building.

So, I get into the office and it turns out that they wouldn't allow Terri to check Harlie in.  So, I had to do it - 20 minutes late.  The nurse (who has been seeing us together - including Terri - for years) said that a parent or legal guardian had to do it and that it was for my child's protection.  So, her home health nurse, could not check her in while the parent was parking the car - for my child's protection?  For real?

Okay, I am going to try not to go off on a tangent about this - but this seriously pisses me off.  How many other ways can our life be made MORE difficult?  Last I heard, I can call a car service to come and pick Harlie and her nurse up so her nurse can take her to a doctor's appointment.  The only thing her nurse can't do - according to the nursing agency with whom she is employed is to drive alone with Harlie.  So, that's why I would have to call a transportation service.  And, just a few months ago - when I had the flu, when I was recovering from my kidney stone - two of her nurses took Harlie to the ER for me, since I was in no shape to do so.  And Harlie was seen and all was fine.

But, now, her nurse can't check her in?  Are you kidding me?  For my child's protection?  What in the hell is this world coming to???

Anyway, we met with her doc and he sat down with us and really listened to me and thought about what was going on.  To spare you all the details, we don't really know why she requires supplemental oxygen when nothing appears to be wrong.  She sounds great, no signs of sickness, and her sats are in the tank.  I really believe that she didn't have pneumonia, but a collapsed lung the whole time.  Her white blood count was the only sign of pneumonia.  The x-rays look the same for both conditions.  And the trach cultures didn't grow anything that would explain her white blood count.  I asked if her WBC could have been her body's reaction to the surgery, cut bone and foreign material that was placed in her jaw.  He said yes.  Either way, by that day, her lungs sounded great.  And he said that he could hear her breathing by mouth!

He was thinking that since she was now taking air by mouth, that the oxygen we were giving her via her trach - wasn't enough.  So, we were giving her 4 liters, but really she was only getting a small portion of that since she was getting air through two different ways.  So, he was thinking we should upsize her trach from a 4.0 to a 4.5, which would reduce the air leak around the trach, and force her to rely more on breathing through her trach.  He said that while this may feel like a step backwards (which it totally does, since that was the whole point of this surgery anyway) that he thought it was worth it to do it temporarily, at least.  But, he was going to send a note to her ENT and let her make the final decision.

I also asked him about the whole energy and walking thing.  And he said that isn't possible to truly measure her lung capacity at this time.  At this point (and this is me talking here) I need to accept that she just can't do a lot, physically.  It's just hard to know whether to push or accept sometimes.  And sometimes, accepting feels like giving up.  

The next day (Friday) her ENT called me to make sure I was aware of the change in trach size.  So, she ordered it and I guess I will try it when it comes in.  I'm secretly hoping that she will be completely off oxygen before the new trach comes in.  Okay, maybe not secretly.  Because it really does feel like a step backwards.

By Sunday, the non-stop gagging and pointing to her mouth was unbearable. During the week I called her pediatrician and asked what I could/should do to help her.  It seemed like there was dead skin on the roof of her mouth and it was bugging her.  And possibly causing (or contributing to) the gagging.  He gave me a solution to make up and rub on the inside of her mouth.

I left to take the boys to a pool party and Tom stayed home with Harlie.  When I left Brandy was still here.  And her and Tom worked on her mouth trying to get the dead skin off.  Well, after a lot of work (and tears, but God love that girl, she wanted this done so she hung in there) this.... thing flew out of her mouth.  It looks like some sort of mucous plug to me.  It was hard and rubbery.

So, maybe since she's able to breathe through her mouth (presumably for the first time ever) maybe things (like her sinuses) are opening up and stuff (like the being that is pictured above) is able to drain out.  I have no idea.  Regardless, she was so much more comfortable!  And the gagging and complaining about her mouth stopped.  For a day.

It started again sometime Monday.  And by today (Wednesday) it was horrible.  I don't know how much more of the non-stop gagging I can handle.  And I'm not even the one doing it!  It's so awful.  Today she started carrying around a bowl.  And she even goes to the bathroom to rinse it out.

Anyway, after the increased discomfort and looking in her mouth with a flashlight, it looks like the stuff is accumulating again.  So, I tried to get in touch with her local ENT.  Her next available appointment was sometime in September.  So, I asked the girl for her email address so I could email her the above photo.  She said she would have a nurse call me back.  Which she did.  But, I had my phone on silent (UGH!) and didn't see that she called until much later in the day.  So, this morning (Wednesday) I called again, and left a message.  The nurse called me back and I gave her a very brief description of what was going on and told her I wanted to get this photo to her doc.  She told me that I should see her surgeon who performed the surgery.  Sigh.

This is one of those occasions when trying to get something done feels exhausting.

No.  I don't think her surgeon is who I need to see for this green slimy stuff growing in her mouth.  Call me crazy.  Granted, her surgeon should know about it, which is why I had already emailed her.  She had no info for me.  So there, nurse.  Please don't second guess me.  I'm not new around here.  I asked her again if I could just send this photo to her.  She finally game me her email address.

I promptly sent the email and I heard back in less than 30 minutes.  She wants to see her tomorrow.  She wants to culture the slimy stuff.  It could be some kind of fungus.

So, just a few minutes after that the same nurse I spoke to earlier called back.  Awesome.  She told me that she got a note from the doc that she wants to see her tomorrow at 10:20am.  In your face!  Is what I wanted to say to her.  But, I didn't.  I said, we'll be there, thank you very much.  How I haven't cracked, I'll never know.

I cannot wait to get to this appointment.  I want someone else - like a doctor - to look into her mouth and tell me what is going on and how to fix it.  Oh, how I hope we can fix it.  Soon.

In other news...

We are going back to Boston on Sunday.  As much as it pains us to have to go back so soon - it must be done.  Her surgeon is going to remove the pins that are sticking out.  This is good because as long as those pins are in, there is a risk of infection and we still have to clean them.  That is still a fight and one I want to end asap.

The logistics of trying to figure out when to go was a nightmare.  She sees patients in her office on Monday afternoons and Friday mornings.  Flying up on a Thursday (which we would have to do for an am appointment) and returning on a Friday or Saturday was WAY too expensive.  So we looked at Monday.   As much as Tom didn't want to take off more time from work, we had no choice.  Sigh.  We have so little choices in many aspects of our life.

And as a bonus, since Tom is taking off time to go to Boston next week, he can't go see his family who are going to be on vacation just a few hours from us.  We knew vacation this summer wasn't likely for us.  But we were hoping that it would work out for him to go for a day or so with the boys, at least.

Another thing I forgot to mention about what's difficult right now is that Harlie's hearing or maybe she's having headaches (which is totally possible after her surgery) is making her super sensitive to noises - especially Cooper's voice.  No matter what he's doing, she's annoyed by it.  So, between her gagging and her complaining about Cooper, my brain is bruised.  I can't send him away all the time and I can't make her head not hurt.  She complained more about pain today than ever.  We actually gave her pain meds twice.  And we aren't even turning her screws anymore.  Our last day of that torture was the 24th.  Boy does it feel wonderful to have that behind us.

Tonight, on our way up the stairs, Harlie asked to be carried.  I told her no, of course.  I'm always pushing her when I can.  She started to go up the stairs and I told her to alternate her feet.  I can't believe after all these years that I still have to tell her that.  Anyway, she seemed to try to do that, but then started to cry.  And asked to be picked up again.  I asked her if she hurt - it seemed like something hurt her when she tried to put her weight on one foot.  She nodded yes, and I asked her where and she pointed to her back.  The same area that she's been pointing to for a few weeks (and it's the area where she had surgery a few years ago).  She was crying real tears.  Something is going on with her back.  It's no longer a coincidence.  Deep breaths.

She has an appointment to see her orthopedic surgeon in October.  Guess I'll have to email her tomorrow.  I really wish this kid could catch a break.

Anyway,  I have more to write about - but it is late and I need to wrap this up.  I'm sorry I'm such a downer lately.  I know we'll get through this.  But, it's just sucky right now.  I hate seeing her look to me for help and me not be able to take away the pain or discomfort right then.  Kissing her boo boos does nothing.  And that makes me sad.  Plus, as I've said before, her life is shaping who she is and who she is going to be.  I hate that there are so many negatives for her to live with and through.  What does that mean for her future?  I'm going to have to up the amount of times I hug and kiss her throughout the day.  She needs more positive contacts in her day than negative ones.

Thank you for reading and for continuing to think of and pray for Harlie, and us.  Knowing we are loved and supported makes us stronger.

Much love,
~Christy xo

Monday, July 22, 2013

Home update

I'm so sorry it's been so long since my last post.  I can't believe she was discharged a week ago today (Monday).  The adjustment hasn't been easy.  I've been quite spacey.  And tonight, I spent several hours writing about our trip home and I just don't think it's post worthy.  It feels like I'm just rambling and complaining and I am not a fan of those kinds of posts.

So, I'm skipping ahead a bit.  I'm super glad to be home.  And I'm sure Harlie is, too.  I'm betting that she slept so hard in the hotel and at home since those were the first nights she wasn't woken up by a nurse messing with her.

The turning is going okay.  It's certainly no easier.  We give her pain meds before and she fights just as hard as she did the first day.  But when we are done for the day, we let her cross off that day on a calendar so she can see we are closer to being done.  I can't believe that we only have TWO days left now!  As long as the surgeon doesn't add another day, of course.  We have to send her a picture of Harlie when we are done to see if she's okay with how she looks.

It seems like the actual turning hurts - she cries a bit.  But once we are done, she stops crying and doesn't complain about any pain.  So, that's good.

She's had speech therapy once and that went well.  I called Amy after I tried to get Harlie to blow bubbles (something that will really help her lungs) and she couldn't do it.  She cannot get her lips closed and she probably doesn't have the lung capacity, either.  Here is Amy getting her to try to close her lips...

Her skin is so tight since it's being stretched.

And she's still on oxygen.

I know that the goal of this surgery was to bring her jaw forward.  And it looks like it's working.  She's making noises that I've never heard before (when she coughs) so I can't help but think that it's because she has more of an airway than before.  She's definitely louder.  So, that's good.  It's probably a really good sign that things are going the way we want them to.

But, it's still very difficult to see her look so different.  I loved her face the way it was before.  And I loved it the way it was before each of her other three jaw surgeries.  I need to think of a way to describe how it feels to see your child's face change so much.  And not in the normal way it's supposed to change.  All I can tell you now is that it's more difficult than you'd think.  It doesn't help that she can't close her mouth.  I can't imagine how uncomfortable that would be.  And of course she won't be able to swallow with her mouth open.  Poor thing.

I was in Target the other day and I heard a woman yell across the store to another woman asking her if she heard about so-and-so and that she broke her ankle.  "Oh, I know!  Isn't that just horrible?!"  "Yes, so crazy!"

Yep.  Horrible.  Crazy.  That's exactly how I would describe a broken ankle.  I hate that I have those thoughts.  I don't know who this person is with the broken ankle.  Maybe she was on the brink of trying out for the Olympics or something.  I'm sure it is horrible and crazy to her.  But, after all I've seen Harlie go through, that would definitely NOT be my definition of horrible.  Or crazy.  It's those moments that make me think I'm not ready for normal civilization yet.

Tonight was the first time we took her out of the house since we got home a week ago tomorrow (Tuesday). Before we left for this surgery, she was always up for going on a walk with the dog (in her chair).  But tonight when we asked her, she started to cry and said no.  We told her she could go in her chair, but she still said no.  So, Tom picked her up and carried her to her chair.  She seemed to have a good time once we were on our way.  She's so funny.  Tom pushed her chair with one hand so he could walk almost beside her instead of walking behind her.  That totally bothered her.  She really wanted him to put both hands on the chair and she made her feelings perfectly clear.  Over and over again.

She has thrush on her tongue from all the antibiotics.  So, we started her on another med for that.  I think Murphy got it when he was an infant, but other than that I have no experience with it.  It was really bugging her the other day, so I wiped her tongue with a towel and it bled.  Ew.  Poor thing.  She's just got all kinds of things going on.  Way too many antibiotics in such a short time.

The other day she went and got her cup from the cabinet and filled it with water.  She went to drink out of the straw and realized she couldn't do it.  She started to cry a very sad cry and handed me the cup.  Oh, it is so hard to make her go through so much.  And I have no idea if she knows why we're putting her through all of this anyway.  I certainly don't want to tell her that we want to get that trach out.  The last thing I want to do is to make her think about it.

Well, that's all I have for now.  For some reason, I'm just not feeling like writing tonight.  See?  I'm having a hard time getting back to myself.

Thank you for all your wonderful, continued support.  I couldn't have survived this month without it!

Much love,
Christy xo

Monday, July 15, 2013

Post-Op Days 10, 11 AND 12

Post-Op Day 10 (Saturday):

Weekends in the hospital are always way more depressing than a weekday.  There are way less people walking around.  The cafeteria is bare bones - only offering a small portion of what is normally offered.  It really has a deserted kind of feel.  

And I didn't pack any pants.  I packed light and really wished I had my exercise pants to lounge around in while hanging at the hospital.  Plus, I needed to get out of here for a bit.  So, I walked to Marshall's by Fenway (which is less than a mile walk) and did some shopping.  I got some pants, a new running skirt (yes, I still have dreams of running again one day) and a couple little toys for Harlie.  I walked back and as I got off the elevator on our floor I heard someone yell, "Mommy!"  And when I turned around I saw Tom, Murphy and Cooper standing there wearing their We Heart Harlie shirts!!!  HOLY COW!!!  It was totally awesome and definitely one of the BEST moments EVER.  Tom got it on video and I've watched it so many times.  I can't figure out how to post it on my blog.  So, when we get home, I'll get Tom to work on it so I can show you.

It was more wonderful than I could ever say to be able to see them and have us all together again!  And you can see how healing it was for Harlie, too!  Just look at her face in this picture!

Happiest Harlie face EVER.
You'd think that by now the boys would cooperate when getting a photo - but nope.  Oh well, we're focusing on Harlie here anyway!  

When we all walked in her room Harlie showed no reaction to seeing Tom and the boys.  But, just a few seconds later she picked up one of her new toys and started calling Cooper and Murphy over so she could show them everything.  And then the nurse was awesome and let her get unhooked so she could hang out in the back of the room with us.  We had to leave to go eat and I thought she would be upset.  She was really mad about having to get back in bed.  And who could blame her?  She's been in that bed for ten days straight!  But she seemed fine with us leaving.  After dinner, we came back and hung out until it was bedtime.  Then me, Tom, Murphy and Cooper walked back to the hotel.  I can't even begin to tell you how many times Cooper has told me that he loves me.  He is so funny.  And affectionate.

The boys had never flown before, so when they landed in Boston, Cooper opened the window shade on the plane, looked out and said in a very disappointing tone, "What?!  We're back at the airport?"  

Anyway, I promise you, since their arrival - she's been a different girl.  No more breathing support, her spirits are lifted and she is more than ready to go home.  The ICU wanted to put her back on CPAP for the night.  But, I asked them to wait until she showed signs of needing it.  When I called in the morning, she was fine all night, and never needed it!  Woohoo!  I was hopeful that after going all night without it that they would move us to the floor and then discharge us home Monday.  

Post-Op Day 11 - Sunday

Saturday night went well.  When the team rounded, I asked them if there was any way to be able to get her discharged on Monday so we could all go home as a family.  They were agreeable.  They could see that she was so much better.  But, they said that she was being sent to the cardiac floor and it would be up to them.  In hindsight, I should have asked begged them to let her stay in the ICU and discharge her from there.  That way, we wouldn't have had to get a new team on board.  But, I guess I was thinking that the team that knew her better would have more pull.  Especially an ICU team.

So, she went back to the cardiac floor.  And they wanted some good x-rays of her chest.  So, we went to x-ray (the portable x-ray machine doesn't produce as good images I'm told).  We went down with no monitor, no oxygen and in a wheelchair.  This girl is ready.

The x-rays are still looking bad.  At this point they are saying it's atelectasis (collapsed lung) versus pneumonia.  But they also said that clinically, she's great.  Which she totally is!

Up and playing OUT of bed.

Hanging with Daddy, enjoying the view.

I think she reminds me of Tori Spelling.  Which, isn't a good thing
if you ask me.  I'm hoping she starts to look more like herself soon.  

As much as I wanted us all to fly home together (wouldn't that have been so much fun?!) it was not in the cards.  The 4pm flight today was booked.  And that really was our only obstacle.  Total bummer.

Post-Op Day 12 - Monday

After MUCH thought (oh, how I hate logistics!) we decided that it was best to try for discharge today, I will take her back to the hotel to spend the night, and then we take a cab to the airport first thing in the morning to catch the 11am flight HOME!!

They rounded this morning, and there is NO way they could guarantee they could discharge her in time to get us to the airport.  And I really don't need that stress.  Plus, she will be thrilled to be at the hotel.  I asked them to get respiratory in here to see if they can rig up some way for me to give her humidified air with the oxygen.  I will have a portable concentrator with us to take home and then we will ship it back here.

Of course we had to say good-bye to the boys...

She's not so sure about this brotherly love stuff.

Oh how I miss these crazy boys!
So, it's now 11am, and I have to run a few errands so I don't have to take Harlie anywhere but straight to the hotel.  One of our obstacles (which I totally wish I had thought of sooner) is the crazy amount of drool.  She is unable to manage them on her own (by swallowing) so she is drooling a ton.  And she hates it.  So, I need to go find some bibs or she will go nuts.  She hates for her clothes to be wet.

Going home alone with her was definitely not in the plan.  But, there's really no way around it.  And I really think I'll be fine.  It gets us home the soonest.  And that's worth it to me.  So, this morning, Tom and I went through all our stuff and he took home everything I didn't need.  So, I will have one small suitcase, the rolling oxygen concentrator, Harlie's backpack, my bag, the suction machine, and Harlie and the stroller.  I can do this!  I am SO excited about getting home I can't stand it!

One total bummer thing that happened today is her in-the-ear hearing aid stopped working.  I'm guessing there's some dried blood in there somewhere.  I tried cleaning it, but I still can't get it to work.  Luckily, we have her BAHA, which works great.  But, it's still very annoying that she doesn't have optimum hearing.  We are going to be very busy with a lot of follow-up appointments when we get home.  ugh.

Back to the boys coming for their surprise visit... Tom told me that so many of our friends back home contributed towards their plane tickets to get them here.  Thank you, thank you, thank you!  Not only was it GREAT for us to be able to see each other again, I firmly believe that changed the course of Harlie's recovery.  Seeing her family lifted her spirits and got her moving, laughing and playing again.  All things that caused a quicker progress in her recovery.  We would not be discussing discharge today, if it weren't for that wonderful visit.  What an incredible gift!!!  We are so, so grateful!

Well, I need to run and get some things straight before discharge.  Thank you for all your thoughts and prayers!  You all helped make a difference and we are so thankful!

Much Love,
Christy xo

Friday, July 12, 2013

Post-Op Days 8 and 9

We are making some progress!  But, before I get started about today, let me give a quick recap on what happened yesterday (Thursday).

They weaned her from BiPAP to CPAP.  Or maybe that happened the day before yesterday?  I can't remember.  Not much else happened, just a lot of hanging out, waiting for her to keep getting better.  

Maggie and I must be drained, because we ended up sleeping in Harlie's room for over two and a half hours!!!  We were OUT.  Then our nurse woke us up to tell us that we had a visitor.  Woohoo!

My friend, Michelle, is from Massachusetts and just happened to be visiting her parents.  She traveled an hour and a half to get here to see us.  Isn't that so nice?  Michelle is a special needs mom, too.  It was so great to see her!  Thank you so much Michelle!  You totally brightened our day!

We all left together when the night nurse got there.  She was the same nurse as the night before, so we left earlier than usual.  I am not a fan of eating dinner at 10pm, so I wanted to have dinner earlier.  We went to Church (an awesome restaurant between here and Fenway).  We had a wonderful dinner (I got the softshell crab special and Maggie got duck) and then they told me that it was on our friends Mike and Laura!  Seriously.  How great are they? Thank you so much Mike and Laura!  

Post-Op Day 10 - Friday

She's definitely feeling better today.  She's been way more active and playful.  They weaned her CPAP settings down and they put her on trach collar for about two hours.  Her work of breathing increased.  Then they put her back on CPAP for most of the afternoon.  It is now 5pm and they just took her off CPAP again to give her another go at the trach collar for a little bit.  They are going to continue to do this (it's called sprinting) for the next couple of days.  

They mentioned doing a bronchoscopy to get a closer look at the infection if she can't come off breathing support soon.  It's a procedure under anesthesia and it does have it's risks, so that will be more of a last resort if she can't come off the CPAP.  

Seeing her be so playful makes me think (okay, hope) that she will be back to her old self in no time.  But I have to be patient.  

Today has been a very busy day.  With Harlie being more herself, she is a lot more demanding!  Look at how busy she's been today:

An art therapist came to see her today.

She colored thanks to Lynda Reider!

And played with this Ariel play set thanks to Kim Smith!

And she brushed her teeth.  Like four times.  
We got a wonderful care package from Kim.  There is a picture of Kim and I in this post.  And there are pictures of Kim's daughter (Adelynn) and Harlie in this post.  They were in the hospital at the same time in March 2012.  Kim's daughter is a heart kid, too and her and Harlie have the same heart surgeon.  So, she sent a well thought out care package, complete with low calorie snacks, toys for Harlie, and the best part - Ziploc bags!    I always wish I had remembered to bring Ziploc bags!  They are so useful for everything!  And you don't notice how often you use them until you don't have them available.  So you could totally tell that she's spent some time in a hospital, too!  Adelynn just had her Make-A-Wish trip to Disney.  She had Ariel sign the card.  Isn't that the cutest?  While Adelynn was at Disney - she still thought of Harlie!  What a sweet, mature little girl!!  

And we had ANOTHER surprise visitor!!!  

Chris Cousins and Harlie - all smiles!
Chris lives in Richmond and travels a lot for work - often to Boston.  This time he went to Maine, but stopped in to see us on his way to the airport.  He brought me strawberries and apples and Diet Coke and he brought Harlie a cute little bear.  He also said he had to deliver 15 hugs from our friends back home.  He follows instructions well and made sure to give me all 15!  It was hysterical!

Then me, Maggie and Chris went to lunch.  And he bought it for us.  Isn't he wonderful?  Thank you Chris!  

And as if that wasn't enough... I received this today:

A Life is Good t-shirt from my dear friend Ann!!!  This shirt is so awesome!  You look at breathing a lot different when your child has a trach.  Thank you so much, Ann!  I will be wearing it tomorrow!  Ann started the Willow Tree Foundation and sells these awesome necklaces:

Ever bending, never breaking.
How awesome is this shirt since it has the tree and the word "breathe" on it?  You can order this necklace from her blog.  

Seriously!  We are so spoiled!  I hope no one is feeling sorry for us.  Because we are so loved and well cared for!  

The only bad thing about today is that Maggie left.  :-(  But not without some photos first.

Maggie and Harlie.

Me and Harlie
Wow!  That's a lot of pictures!  You can tell things must be looking up!  And a few of you mentioned on Facebook that you can already see a difference in her jaw.  Her surgeon came to see her a couple of days ago and said she could already tell, too.  We've turned her screws for nine days now.  Which means it should have come out 9mm.  I still can't see it yet.  But I am patient.  And Harlie is so strong!  She definitely fights the turns - but then she realizes that there's no use and lets me do it.  I know it hurts her, but she is getting so good about it.  So far, I think turning them two times at once in the morning and then one time at night is working well.  I can't bring myself to turn them three times in a row.  And by the night turn, I can tell her "just one turn, Harlie and we'll be all done!"  She's really done great.  And she's only getting pain meds an hour before the turns (which means twice per day and one time during the night).  She is something!

Okay, I think that's it for this post.  We are doing really well.  So, please don't worry about us.  I do miss home.  It has now been two whole weeks since I've seen Murphy and Cooper.  And that's definitely hard.  But I think I can see the light at the end of the tunnel now.  We are getting there - slowly but surely.  

Thank you so much for the love! 
~Christy xo

Wednesday, July 10, 2013

Post-Op Day 7

Harlie is holding steady.  The swelling is definitely going down.  This is her attempt to smile on command...

As far as how she's doing, this is the summary:

It looks like she's plateaued in her recovery.  The past few days have shown no improvement.
Her x-rays don't appear to be worse, but they are not any better.
She doesn't sound any better, lung wise.
She was still working pretty hard to breathe while on CPAP.  So, this afternoon they put her back on BiPAP to give her a little more support, to see if that helps her more.
Due to the antibiotics, her GI system is revolting.
She is staying consistently negative in fluid - meaning she's losing more fluids than she's receiving.
She is sick and this is a yucky, stubborn pneumonia.

This afternoon, she got moved out of the cardiac ICU and into the medicine ICU.  The move was based on bed management, and not how she's doing.  This is not a step up or step down.  We're certainly not new to that.  And I totally get it.  But, it is a little disrupting.  I can't remember if I wrote about it before or not, but the only annoying thing about it is that what I'm told about where we are going isn't consistent.

To recap:

I was told over the phone prior to surgery that she would go to the cardiac ICU post-op.  But when she came out of surgery, she went to the medical/surgical ICU, 7th floor.

Then when we left that ICU, we were told that she would go to a medical floor.  But, we went to the cardiac floor (8th floor).  When I questioned why we were sent there instead of where I was told we would go, I was told that the cardiac floor has the right monitors, etc. to watch her heart.  Makes sense to me.

Then we went to the cardiac ICU (8th floor).

Then I was told today that we would be going to the surgical ICU back to where we went immediately post-op (7th floor).  Then they told me we were going to the medicine ICU (11th floor).  And, by the way, "the medicine ICU is actually better because they get more cardiac kids."  So, if it's better, then why were you going to send her to the 7th floor?  I just feel like I'm being talked into things sometimes.  And since I have NO idea which floor/unit is best for her, I can't be a part of the decision, I have to just go with whatever they say.  And that is difficult sometimes.

Plus, it's so great when you get to know a team, and the team gets to know your child.  And the nurses start to repeat.  It just makes a hospitalization less stressful.  For me and for Harlie.  As a nurse gets to know Harlie, they learn what works and what doesn't.  And as Harlie gets to know the nurse, she could potentially learn to trust him/her, which could reduce the amount of fighting Harlie does.  So far, in this seven day stay, we've been in four different units.

It's exhausting.

I know that no one can tell me when she'll get better and when we can go home.  I do know that this is the sickest she's ever been and she's had pneumonia several times.  She has never needed breathing support for this long.  But, I still have logistics to think about.  We can't keep the hotel room forever.  So, I asked the new team to give me their best guess based on the severity of her pneumonia, as to when we would go home.  You know, if you were a betting man, so to speak.  And they said another five or so days in the ICU, followed by a few days on the floor.

So, Maggie is going to leave on Friday.  I think I will try to hold on to the hotel room for as long as she's in the ICU.  I think I need the walk to and from the hotel each day.  And sleeping in the hotel will allow for better rest.  I'm afraid that moving into the hospital will help wear me down faster.  And I'm already starting to feel a little stressed as it is.  It is never easy to not know when you're leaving the hospital.  I'm reminded of when Harlie was six months old and had a chylothorax after her second heart surgery.  She was inpatient for over two months.  And we never knew when it was going to end.  It was awful.  And very trying emotionally.

I spoke with a cardiologist that has been following her this stay.  I think he's fabulous.  He said we could potentially look at transferring her closer to home.  I was immediately excited about the idea.  Being closer to home could change everything.  I'm thinking DC is where I would want her to go.  Then we could be with all the docs and nurses that know her best.

But, after talking to Tom, he reminded me that Plastics is still seeing her while in Boston.  So, if she went to DC, we couldn't have any follow-up with her surgeon.  So, that wouldn't be good.  Darn it.

I got out this morning.  Maggie came to the hospital and I stayed at the hotel, got our clothes together and took them to the laundromat.  After I put the clothes in the washer, I went for an easy run.  It feels like months since I ran last.  So, I ran two miles.  Yay me!  I know it's not much - but I am starting over, so I can't go crazy.  After the run and the laundry was done, I went back to the hotel, showered and went to the hospital.

While it was SO nice to be out, I think it made me want it even more!  I SO want to be back home, in my house, with my boys, my husband and my dog.  My life feels so very far away right now.

Okay, Harlie is asleep and Maggie and I are hungry.  I will update again tomorrow.

Thank you for all your continued thoughts and prayers.

Much love,
Christy xoxo

Tuesday, July 9, 2013

Post-Op Day 6

Whoa!  Look who's feeling better!!

She smiled twice this morning - and I got one of them on camera!!!  Woohoo!  And she's even changing the channels on her TV.

For the first time in almost a week - she can be focused on something outside of herself and her breathing.  I would say we are on the up and up!

Her night nurse said she had a "fantastic" night.  She slept well.  And they took her off the BiPAP and put her on CPAP to see how she would do with a little less breathing support.  And so far, so good.  

They rounded on her this morning and they are going to leave her on CPAP for at least another day or so. Her x-rays look better on the left - but her right lung still shows a large infection (or lung collapse).  The blood work shows that the antibiotics are working, because her WBC is way down from where it was two days ago.  Based on her cultures, they are changing her antibiotics again.  I can't remember what she's on now. 

Yesterday, her surgeon came by to see her.  On her way out the door she said, "Oh, yeah, and if you hear a pop when you turn her screws, don't panic.  That's normal."  Ew.  But, I'm glad she told me because you can bet your butt that if I heard a popping sound when I turned her screws I would FREAK.  So, maybe now I'll just be SUPER grossed out.  

I really liked how I was able to turn the screws all at once yesterday and not have the task hanging over my head all day.  So, I thought I would try that again.  But, I could only turn them twice.  I just couldn't make myself turn it one more time.  I wish I could ask her which hurts more - turning it once, three times a day, or turning it three times, once a day?  I guess I'm going to have to play with pain meds and turning.

Anyway, she has been a lot more awake today.  Which is a definite improvement.  But, she is still working pretty hard to breathe - even on CPAP.  And her lungs still sound horrible.  They are definitely not rushing her out of the CICU.  I asked her nurse today (who is awesome, by the way) and she said if she were to make a guess as to how things are going to go - she would say she'll stay in the CICU for another few days, and maybe be ready to go home by mid-week next week.  Oh boy.  

Trust me, I am NOT complaining!  Last night, after we left the hospital, Maggie and went to find some dinner.  We walked back toward the hotel and tried a sushi restaurant one of our nurses recommended.  We ordered a glass of wine and celebrated how different things were from the previous 24 hours.  I would rather hang out here for as long as it takes with Harlie improving versus going through another second like Sunday night.  But this does mean we have to think about some logistics.  But it's so hard to plan when you're working around her getting better.  Especially when she still needs the breathing support.  

Earlier today she had to come off the CPAP for a few seconds, and she turned grey.  As soon as her nurse hooked her back up, the color returned to her face.  So, while she IS improving, she still has a ways to go before we can leave the CICU.  

At some point, Maggie has to go home.  I guess we'll send her home Thursday or Friday.  And Tom's mom will bring the boys home on Friday.  It looks like Murphy will get in two practices before the last swim meet on Monday.  

For some reason I've had a really hard time writing today.  It's taken me all day to write this.  I think I'm getting a bit tired.  It's just kind of draining to spend all day, every day in the hospital.  And I haven't felt great the past few days.  I think I'm feeling run down.  Tomorrow Maggie is going to come to the hospital so I can go and do the laundry.  Hopefully that time out will be rejuvenating.

Oh, and we just ordered more We Heart Harlie t-shirts.  So, if you ordered off the blog, you should be getting your shirt in about three weeks.  

We are about to meet the night nurse, so I have to go.  Thank you for all your continued thoughts and prayers!  I am still feeling the love! 

Much love back,
Christy xo

Monday, July 8, 2013

Post-Op Day 4 and 5

Another tough day.  To cut to the chase, Harlie is sick.  She is worse than she was yesterday.  Which is definitely not the direction we want to go in.

Post-Op Day 4

They changed her meds.  They took her off the Gentamicin and Clindamycin and put her on Vancomycin and Zosyn.  All IV meds.

She has been suctioned about a hundred times today.  And she sounds so bad.  You can hear how awful her lungs are from across the room.  She's been sleeping 99% of the time.  We have to force her out of bed to try to go potty.

She's even worse now - at 6pm - than she was earlier today.  She desperately needs a bath.  So, we started to give her one (in the bed, of course) and the second I started to lay her down flat on the bed, she immediately desatted, turned blue and struggled to breathe.  We had to abort the bath.

They are going to take another x-ray and try upping and adding an additional diuretic med.  And they are considering moving her back to the ICU.  At this point, her current nurse and I, believe she is too much for the floor.  She needs more.


I wrote the above yesterday (Sunday).  Things got crazy, and then it was way too late to write.  It is now Monday morning at 8am and it is MUCH easier to write about yesterday and last night now that she had a good night.

Yesterday she was definitely going in the wrong direction.  She really scared me when we tried to do the bath.  It wasn't that she just desatted - she was struggling to breathe.  After that it was "only do what you absolutely have to" and it was obvious that she was going downhill.  I've been around and seen enough to know that things can turn quickly.  And I really thought that we were heading in that direction.  They agreed, because they transferred her to the CICU around 10pm or so.  They immediately rounded on her and within minutes they were busy helping her.  They got another EKG.  They stopped her feeds until things improve.  They got another chest x-ray.  And they hooked her up to BiPAP.  I thought they said CPAP, but I was mistaken.  BiPAP provides her a little more breathing support.

She normally fights anything that helps her breathe - but within three to four minutes, she slowly relaxed and fell asleep.  Her body is so freaking tired.

Over night, since her body was finally relaxed a little, she peed over a liter!!!  Woohoo!  You can already tell a difference...

Post-Op Day 5

And she's been awake watching TV for the last 45 minutes.  That is the most she's been awake since her surgery on Wednesday.

They need to get more blood for labs and they want to see if they can get a new IV in.  They don't want her fighting or getting all worked up, so they are going to give her some sedation.  Hopefully it works and I can turn her screws all three times at once, so I won't have to do it again today.  That would be awesome!

Well, it's 9:35am now and her nurse gave her a dose of Versed, Morphine and Valium and she was not relaxed.  She was still putting up a huge fight.  So, her nurse gave her another dose of everything and she STILL fought.  It took four of us to help get the IV in.  She wanted to put a larger needle in and she got it in, but Harlie fought so much that she lost it.  Crap.  They got what they needed for labs, but they didn't get that IV in.  I was able to turn her screws, though.  Since she was on a lot of meds, I took advantage and turned them three times to get it over with.  I also cleaned her pin sites, too.

Her nurse said that the two of us would be asleep on the floor with as much as she gave Harlie.  And she's STILL awake now.  She kills me.

It is now 11:20am, and they rounded on her.  They took x-rays last night and this morning.  And they said that her lungs already look better than last night.  Thanks to getting rid of one liter of fluids!  They also had more questions about her echo (ultrasound of the heart).  They have never been able to get a good study (because she fights so much).  So, the doc said she wanted her to be sedated again to do it.  When the nurse told her about her meds from earlier, she said to add Ketamine.  And more Versed.

It took twice the amount they initially thought to get her calm.  Crazy.  So, she's getting the echo now.  Hopefully that will answer all their questions, and will give us a good report to ease our minds.

It is so nice to see her so relaxed (look at how her leg is crossed).  Right now she is feeling no pain and that makes me feel less pain.

I know I make light of a lot of things.  And I joke about a lot of things.  I'm sure there are many a nurses/doctors out there that have wondered if I get how complicated she is.  I do.  I assure you.  But, it is SO hard to worry like I did last night.  My stomach hurt so bad.  And it's not a hurt that I can just stop.  What if she continues to get worse?  What if the meds don't help?  What if her heart and body just wear out?  All of that could happen.  We are not in control as most would like to think.  And you realize that real quick when you're standing by your child's bedside.

I stayed with Harlie and her nurse until Harlie went to sleep for the night.  Her nurse said she would be in her room the whole night.  And she said that she would most likely sleep soundly all night.  So, I left after midnight and took a cab back to the hotel room.

It would have been easy to be really sad and depressed at that moment - sitting in a deserted children's hospital, waiting for a cab while my daughter lay sick upstairs.  I was super tired and worrying like that about your child takes a lot out of you.  But, I had - what felt like the whole world - supporting us on Facebook.  I couldn't believe the outpouring of support for Harlie.  I felt all the strong vibes you were all sending and I let them help me through.

I slept for a few hours and then came in early this morning. It was SO wonderful to hear that she had a great night and that she made some progress.  The BiPAP was the right call.

Well, she started to fight the echo, and they aren't done getting what they need to get.  So, her nurse just gave her more meds!  Geez!

Anyway, I am so thankful that she seems to have already turned the corner a bit.  I think they will keep her on BiPAP throughout the day and night and see where we are tomorrow.  Hopefully the rest of the day will be pain free and restful for her.

Oh, last night I said, "Harlie, who loves you?"  And while her eyes were closed, she pointed to me.  Oh, the little things.

Well, that's it for now.  Thank you so very much for your thoughts and prayers.  All the good vibes you are sending our way are working.  I'm so, so grateful for all the love and support!

Much love,
Christy xo

Saturday, July 6, 2013

Post-Op Day 3

She is definitely more swollen today.  But they say the third day is the worst.

And she's still holding on to a lot of fluid.  After two IV doses of Lasix, we haven't really made any true progress.

At 8am cardiology rounded.  Loved this doc and how kind and thorough he is.  When they put the IV in yesterday they got some blood for labs.  Her white blood count (WBC) is high, so they are going to start a broad spectrum antibiotic.  They also got some of her secretions last night to culture.

Her lungs sound coarse and crackly.  So it sounds like she's worse today than yesterday.  When she cries, she makes NO sound at all.  Which means she is swollen around her trach tube (usually there is a leak around, which allows her to make sound).

In order to get her home, she has to be fluid balanced - or at least heading that way - on oral (well, through her g-tube) Lasix versus IV Lasix.  He said if the IV Lasix works, and they send us home to find that the oral kind doesn't work, then we'll be in trouble.  So, she needs to get rid of lots of fluid, get switched to oral Lasix, keep the fluid off for a while, before we can be discharged.

Unfortunately, her second IV blew.  So, they have to start another one.  Plus, get more labs.  They want to see what her WBC is today in comparison to what it was yesterday.

I turned her screws this morning and afternoon.  Only one more time today.  They are getting harder to turn already and it is really hard to do it.  It grosses me out and I know it hurts her.  So, to cause more pain for her is awful.  Truly awful.  Especially since we have to turn the screws three times a day - which is six times per day since there are two sides!  Plus, we have to clean the pin sites whenever they need it.  We have to keep those sites clean to reduce the risk of infection.  If she thinks it hurts now, I don't even want to think about how much it would hurt if they got infected.

I think she is going to give herself a brain injury with all the thrashing she's doing.  She swings her arms until you hold them down, then kicks until you hold her legs down, then she starts throwing her head forward and backward and side to side.  It is so awful.

I've had to show some pictures of her to her nurses so they know what she really looks like.

The IV team just came in to start a new IV.  It took four of them to get it in.

Can you imagine how scary this is for her?  Four nurses in gowns and masks inflicting pain, and your mom sitting in the room, not stopping it.

In summary, this is what has happened today:

Had to start an IV.
Had to get labs, not utilizing the IV, so they had to poke her and take blood that way.
Had to get more labs, but from two different areas of her body.  So two more pokes.
Had to clean the pin sites.  Still need to do it one more time today.
Had to turn the screws, two times on each side.  One turn per side still to go tonight.
Got two x-rays.
Got an EKG.

If you only knew how hard she fights all of that stuff.  She is WIPED OUT.  This room is freezing and she's a sweaty mess.

I have to say that her nurse today was very apologetic to Harlie.  I could hear the compassion and sincerity in her voice as she told Harlie over and over again that she was sorry.  She said the night nurse was going to have to clean her pin sites - she just couldn't inflict any more pain on her.  I hear ya, sister!

Well, as you might be able to tell, I work on my blog post throughout the day.  So, things are constantly changing.

I just spoke to the doctor again (love him!) and he said her WBC went from 25 to 30, which is high.  They also did another test that tells them the cause is most likely bacterial versus viral.  And based on her most recent x-rays, they are suspecting that she has pneumonia.  They are having Infectious Disease (ID) consult to see if they can target the bacteria a little better so they can get the right antibiotics in her.

We have taken a few steps backward.  And there is definitely no more talk about going home.

Here are the meds she's on right now:

IV Gentamicin
IV Lasix
IV Clindamycin

We'll see what ID says tomorrow when they come to see her.

Tom should be finishing his 200 mile bike ride anytime now.  They started at 6am.  It is now 8pm.  I hate that he is doing something so difficult and I'm not there to support him.  He is always so supportive of me when I run races.

Well, I'm going to go now.  Thank you so much for all your incredible support.  All of your kind, heartfelt messages are really helping me get through this.  I knew this was going to be tough.  And it is.  And will continue to be for a while.  Please know how much I truly appreciate you taking the time to comment, text, email or call and say nice things to me.  I can't respond as much as I would like.  But, I am feeling the love.

Much love back,
Christy xoxo

Friday, July 5, 2013

Post-Op Day 2

She's been sleeping a lot.  Both today and yesterday.  She's also holding a lot of fluid.  She's almost two liters positive - and still not peeing.  So, they gave her a dose of Lasix (a diuretic) through her g-tube.  That didn't work.  So they had to start a new IV to be able to get her an IV dose of Lasix.  They did that a while ago, and she still hasn't peed.

They've tried weaning her off the oxygen - several times.  But, that has not been successful so far.  Hopefully if she can get rid of some of the fluid she's holding on to, her sats will come up a bit.  But, just in case, a portable, airplane approved, oxygen concentrator is being delivered tonight.  We're going to take it home with us, regardless of what her sats do here.  I have a portable pulse ox and can check her sats on the way home and use it as needed.

The plan this morning was to leave her on the plastic's service (meaning that her plastic surgeon has to write all orders and make all final calls) and switch her to cardiology's service tomorrow if it looks like she needs to stay a bit longer.  But they switched her today.  I think all the orders for the Lasix, labs, the oxygen to take home, etc., just got a little much for plastics.  At this point, she really should be on cardiology's service, since what's keeping her here isn't plastics, but her heart and lungs.  That's another reason why she should go to the cardiology floor post-op from all surgeries.  Must remember that!  I think I want to believe that she's FINE and we can focus on what brought us into the hospital.  But, that's just not the case.  Her body takes a beating when she undergoes surgery and that's just the way it is.  Poor girl.  Some things just don't seem right, you know?

We were hoping that we could go home tomorrow (Saturday).  There is a late afternoon flight, which would give us enough time to check out of the hotel and get discharged (never know how long that's going to take) and get to the airport.

But, honestly, it's hard to imagine taking her home - with the travel involved - with how things are right now.  She really does seem miserable.  And very, very sleepy!   Although she woke up when she heard me taking her picture.

Day 2 Post-Op

Day 2 Post-Op
The bruising has gotten worse.  Especially on the left side.  And she's scratched her face all up from all the fighting she's doing.  She's beginning to fancy the karate chop and pinching my arm - especially when turning the screws.  I can't say I blame her.  This is really awful for all of us.  I wish I could just scoop her up and be only a source of comfort for her.  But, that shipped sailed a long time ago.  Sigh.

Yesterday Tom and I were coming up the elevator with a man pushing a woman in a wheelchair.  We got off on the same floor and they went into the NICU and we went into the ICU.  Clearly, she just had her baby and was being wheeled over from the hospital next door.  Tom said, "Don't you want to say something to her?"  I said, "Like what?" And he said, "You know, that it will get better."  And I said, "But we are STILL here!  Six and a half years later.  I don't think that would be very comforting to a new mom."  He said, "Well, you wouldn't have to tell her that part."

So sweet of him to see a new mom and remember what it was like for us all those years ago and want to offer some comfort and hope to someone else.  Been there.  Done that.  Still doing it, actually.  On our way back from lunch a helicopter landed on top of the children's hospital.  Both Maggie and I looked up at it.  Then I said, "Been there.  Done that."  We both laughed - Maggie was thinking the same thing.  Oh, the memories!

This afternoon we actually got Harlie up and out of bed and took her for a little walk around the unit.  She did really well all things considered.  She definitely complained and held her hands up for me to pick her up several times.  But, I was strong and let her take a break and made her continue walking.  Walking will really help recovery.

Tom left this afternoon and flew to DC.  Tomorrow is his 200 mile bike ride! If you could send him some good wishes, that would be great.  I think he is nervous.  But he has been very dedicated to his training for six months.  I really think he will do great.  I just want him to stay safe.  

Okay, it is late so I'm going to wrap this up.  Harlie is all cleaned up for the night and sleeping soundly.  Hopefully she will turn the corner tonight, get rid of a lot of that fluid and feel better tomorrow.  I'll let you know!

Thank you!!!
~Christy xo

Thursday, July 4, 2013

Post-Op Day 1

So far, so good.  She is definitely more swollen and bruised today.  And I'm guessing she might even look worse tomorrow.  But, overall, not too bad.

She's not coughing much and her breathing is back to her baseline.  She's still on some oxygen support, but that's totally normal for her.  So, everyone is happy with how she's doing so far. 

I can't remember if I told you in the last post that she has already asked for water.  Which is nuts.  She asked to drink water yesterday - something I don't think she has ever done immediately post-op.  Especially after surgery on her jaw!  She tried to drink from a straw but couldn't get the suction going.  So she sipped out of the cup and kept asking for more.  She amazes me.  She's continued to take sips today, too.  

The surgeon came by this morning and took a look at her.   Her orders were to clean the hardware sites.  The blood is following them out of the body (they are kind of acting like a drain).  So she wants that area kept clean (I'm guessing to continue to allow the blood to drain out and then stop on it's own instead of it scabbing up and then preventing the blood from coming out).  Well the nurse tried, but Harlie wouldn't let her.  Oh, Harlie.  So, this morning Dr. Padwa told me that and then said, "So, you're going to have to do it." Great.  

So, a nurse came in to help me get her all cleaned up.  Harlie did put up a fight.  But, with the two of us, we were able to win.  And I was pretty darn proud of myself that I could clean her up so well.  I think my side was cleaner than the nurse's!  So when I changed her trach ties, I went around on that side and cleaned it, too.  I know she feels so much better!

Harlie's IV started leaking, so they took that out, too.  And I'm so thankful that they said they didn't have to start a new one.  Woohoo!  After we got her all clean she signed "potty."  So we took her to the bathroom and she peed!  So, that's really good.  

Oh, and when Dr. Padwa was in this morning, she showed us how to turn the device.  Here is the tool we have to use.  

The tool makes it pretty easy to do.  As long as Harlie doesn't thrash all about.  We have to turn it three times per day.  We can do it in any way we want - all three turns at the same time, or spread the turns out throughout the day.  Right now it is pretty easy to turn.  But she said it will get harder (meaning it will have more resistance).  Ew.  So, I don't see me wanting to make three turns in a row.  I think we'll spread it out for now and see how that goes.

Here is a close up of the hardware.

She used her old incision scars to access her jaw, so she wouldn't make new ones.  Her right side is the more abnormal side, so she had to spend more time working on that side, which left it more swollen than the left.

The pictures really don't do it justice.  She looks so big and square.  Well, she has a jaw now, whereas before she really didn't.

As far as what our plan is... well she is being moved out of ICU and onto the floor sometime today.  Of course there was some discussion as to which floor to send her to.  The cardiac floor or the surgical floor?  Do I want someone who's good with the heart or someone who's good with the wounds?  I'll take both, thank you.

When I was asked what I thought (very nice to ask for my opinion) I told him that it is difficult to be on the cardiac floor (or under primary cardiac care) when we are not there for cardiac reasons.  I just don't feel like we fit in.  They are usually dealing with far more serious situations.  Plus, I need the nurses that know how to take care of her incisions.  As long as the surgical nurses know when they need to call cardiology to come and look at her, I'm fine.  So, that's where we're going at some point today.

Dr. Padwa said we can take her home whenever we are comfortable and ready.  Our plan is to take her home and then bring her back for her follow-up appointment versus us staying in the hotel here until her next appointment.  I just don't have what I need (oxygen, humidification) to feel comfortable doing that.

Tom will fly to DC tomorrow afternoon.  He is riding in an ultra cycling event called the Total 200 on Saturday.  Yes, he will be riding his BIKE for 200 miles.  Crazy.  My niece Maggie, is flying up tonight to stay and then help me get Harlie home.  I think we are going to shoot for flying home on Saturday.  Our goal is to get her on room air and off the supplemental oxygen.  If that doesn't happen in a timely manner, then I will get the hospital to get me the portable oxygen again and will take her home on that.  I just want to make sure I have whatever I need to get her home safely.  Hopefully we can secure these arrangements tomorrow morning.

And then we will fly back up here next week to see Dr. Padwa again.  I'm tired just thinking about it.

Okay, so we just got moved to the floor.  They didn't have the room set up for her trach.  So that was a scramble.  Then the nurse said this was the cardiac floor.  So, I said I was confused since I just had that conversation with the ICU doc earlier.  So, a few minutes later an attending showed up and said, "I heard we had a problem?"  Ugh.  I really didn't mean to cause a problem!  I was just confused since we were not in the place I was told we were going to go.

Well, the attending said she really can't go anywhere else because those areas aren't set up to monitor heart patients.  Oh!  Yes, I remember this being an issue before.  Plus she said those nurses would see her numbers and would call a code.  I think she was sort of kidding.  Anyway, problem solved.  We'll be here and that's fine.  It's a private room with a window.  And with any luck, maybe we'll get a view of the fireworks.

We just cleaned her up again.  I really hope she'll get used to this stuff soon.  And we (okay, Tom) turned her screws for the last time today.  Tom said, "Three turns a day for 25 days - 3 turns down and only 72 to go!"

We've talked to the boys and Tom's mom a few times.  They are having fun.  The other night Tom was talking to Cooper and gave me the phone.  I said, "Hi Cooper!" and it was as if he wasn't expecting me because he paused and then his voice got soft and he said, "Mommy, I love you."  He's such an affectionate little guy.

Yesterday, Tom's mom said that Murphy was quiet all day.  When she asked him if anything was wrong he said, "I'm just worried about my sister."  Poor kid.  It will be way better when we all get home together again.

Maggie just got here.  And Harlie is sleeping soundly.  And our night nurse is one that we had last time and loved.  And she has a helper tonight - and they only have two patients!  Awesome!

Thanks for all the love and support!
~Christy xo

Surgery Day

I wasn't able to blog yesterday (surgery day) so I'm going to write two posts today.  This one is for yesterday - July 3rd.

As I mentioned before, we were getting concerned that she was getting sick.  My gut was telling me she wasn't - that she was just adjusting to the drier air here (way less humidity than what she's used to at home).  But, I really couldn't be totally sure that it wasn't a touch of wishful thinking.  By Tuesday night, I was preparing myself for disappointment.  Not that I really want her to have this surgery.  But, I want the potential results - asap.  And there's no getting around this surgery anyway.  It is not elective.  It must be done.  So, let's just get it over with and possibly reap the rewards in a few months.   So, not getting it at this point would be a disappointment that would be difficult for me to get over.

She had an okay night.  Not a lot of suctioning.  But her oxygen saturation levels were all over the place.  And she was breathing rather hard for her.  My thought was that her body was having to work harder to maintain her sats, so she had to take more breaths per minute than typical.  She was not sick.  Hopefully.

Surgery was scheduled for 8:30, so we had to have her there at 7am.  Tom and I didn't talk much on the way there.  We were sad.  We got there and got her all checked in.  When they took us back to start the whole process of preparing her, there was a lot of discussion about how she was doing.  I told them what my thoughts were.  They listened to her lungs (clear!) and she had no fever.  Her sats were about 83 (which is kinda low for her).  But to be honest, I was pleasantly surprised they were that high.  Although low sats alone would not bother me pre-operatively.

I was not too confident in my opinion on what was going on with Harlie because I was afraid my desires were swaying my opinion.  So once anesthesia came to talk to us (and we went over everything again), they asked us how we felt about it.  I told them that I thought I was too vested emotionally, and financially in having this surgery today to be able to make the final call.  I wanted them to do it.  Luckily, they agreed with my thinking and said they felt comfortable with her having surgery.  YAY!  They said that if she were supposed to go home immediately after, no.  But, since she is going to the ICU, they can support her and give her IV antibiotics, etc.  Plus, she had the same anesthesiologist as last time, so he knew her.  Awesome!  So, it was a go!

Here Harlie is focusing on Spongebob on the iPad to get her through this.

I love that they don't make me change her clothes.  They said they could do it once she was under.  So it wasn't worth upsetting her.  Then they let me walk with her all the way into the OR and I stayed beside her until she went to sleep.  Poor kid.  I hope one day her and I will be able to have long talks about what she remembers and how she feels.

And here is the empty stroller we pushed around most of the day...

Surgery took about four hours.  Dr. Padwa came out and said that it went great.  No problems whatsoever. Just what a parent wants to hear!

Here she is about an hour post-op...

Hopefully the ice packs will help minimize the swelling.

And here she is already up and asking to watch TV.  If you look at the picture closely, you can see the metal  sticking out right under her ear.  That is what we will turn every day.  The metal is actually springy - so it's flexible.  Which has got to be more comfortable than a rod!

She slept a lot on and off, of course.  And she wouldn't pee.  She tried, but she just couldn't.  By about 9pm, they had to cath her since it had been since 6:30am since she had gone.  And that was after being loaded up with fluids in and out of the OR.

Tom and I went to dinner at a place we found last time and loved, Church.  Just a few minutes after sitting down, the manager came up to us and said, "Are you Tom and Christy, by chance?"  Then he said that dinner was on the Young family in Richmond.  Seriously?  Tom had "checked in" there on FB and BAM!  Sally was on it!  We are just overwhelmed.  All the time.   It was a wonderful dinner.  And we really enjoyed being able to sit down, relax, take a deep breath, and drink a couple glasses of wine.  So, thank you Sally and Glen!!!

After dinner we walked back to the hospital and hung out with Harlie for a little while.  At about 8:30, I asked her if she wanted to go night-night.  And she nodded her head and closed her eyes.  So we said good-night and gave her kisses and walked back to the hotel.  By that time, I was way too tired to write.  I have not gotten adequate sleep for the last four to five nights and I don't think I realized how truly tired I was.    This emotional up and down, changing gears kind of thing, can really wear you out!

Okay, so that was yesterday.  Now I will write about how she's doing today.  So, check back soon.

Oh wait! One more thing...

While we were in the waiting room, we were overwhelmed at the amount of support we were getting on Facebook!  So many pictures of people wearing their We Heart Harlie t-shirts!!  So many messages of love and support to read.  What a wonderful way to pass the time!  There's simply no way to ever tell you how much that means to us and how much it truly does help get us through the hard times.  So, thank you.

Much love,
Christy xoxo

Two weeks down, six to go.

Hi, I'm sorry it has been so long since my last post.  I have so much I want to say.  I've started to write this post several time...