My really crappy day.

I'm going to go back and talk about my really bad day - March 19th.  I think I needed to get on the other side of that to be able to write about it.  I've actually been working on this post since it happened and for some reason, I've been struggling with my decision to share it.  I am sharing it (finally) because I do want to preserve these memories.  And even though I might find my bad days hard to share, it will be a good reminder to me in the future.  And, really, it isn't possible to live this life without the bad days - so I shouldn't be embarrassed by them. 

What you need to know about what lead up to this day:

1. It is hard to care for a medically fragile child on a good day.  It feels downright impossible to do it during a pandemic. 

Add to that - recovering from a major surgery at the same time.  AND preparing for another followup surgery that is supposed to happen in May.  None of our coping techniques are available to us right now.  And our worries just grew.  Not only are we worried about her health during this particular recovery - but now we are terrified of this virus.  Harlie has heart and lung disease.  In November, the virus that causes croup put her in the ICU on a ventilator for two weeks.  How in the world would she be able to fight coronavirus?  And how would we be able to be there with her?!?!? They are limiting visitors - even parents. And where would I take her?  Ugh, I have to stop thinking about that.  But, I can't, really.  Every decision I make feels so life or death.  So, how do we live our lives like this?!

Because of all this, we feel alone in a room full of people who love us.  We know that our fears, experiences and needs are not the same as those around us. Now there is no one around us at all.  I find myself almost jealous that the world gets to share the same fears (coronavirus, financial, emotional, etc.) at the same time.  Even though we are feeling all of those same things - we still feel different.  I see parents putting energy in to their children's education with homeschooling, etc. and I don't have that energy to give.  So, then I feel terrible for the boys - hell, I feel terrible for Harlie, too.  How do I homeschool her?!

2. I am always fearful of the what ifs.  And these fears are totally based on the what happeneds.

So, it is almost impossible to comfort myself.  This is why it is so important for me to know that her doctors can see her.  They are my back up.  I take her to them so they can be a voice of reason.  They don't have PTSD (regarding Harlie, anyway, haha) so they can look at her differently than I do.  I cannot stress this enough.  Right now - they are not as available.  So, seeing them face to face is very difficult, if not impossible.  This is not helpful nor comforting at all.  And it adds to my responsibility to catch something as early on as possible - with subtle, atypical indicators (no fever, redness, etc.).  This feels impossible.  And I'm afraid I'm going to have to wait for a more reliable indicator because being wrong and jumping the gun could lead to a worse outcome (exposing her to the virus). 

3.  We are tired.  Like, really tired.  We ran out of gas a long time ago.

Our youngest child is 11 years old and we still have to sleep with a baby monitor so we can hear when Harlie needs us.  And when I say "needs" I don't mean she wants a glass of water - I mean her sats are alarming because they are below 80 (maybe her trach collar came off) or her humidified line gets too much water in it, etc.  We rarely get a night's sleep uninterrupted.  Like, Tom and I talk about it excitedly when it happens - "Did you get up last night?"  "No, did you?!"  "No!" Crazy.

During her recovery, we have had to get up to give her meds, comfort her while she cried, etc.  So, it has been worse than usual the past several weeks.

4.  Simple things are harder than usual. 

A few weeks before Harlie's surgery (February 24), I tried to refill her Sildenafil (for pulmonary hypertension).  We have to get it from a specialty pharmacy that has to mail it to us (and we have to be home to sign for it, which only makes things more complicated).  I wanted it done so I didn't have to worry about it while we were in Boston.

Here's the condensed version of what happened...

Feb. 24 - I called the pharmacy, re-ordered her meds.
Mar. 2 - I get an automated message from the pharmacy that says they are contacting her doctor for something.
Mar. 9 - I called the pharmacy, found out they needed a pre-authorization and have been unable to get it. I sent an email. We paid cash for meds from Boston to get us by (insurance won't cover prescriptions written by docs out of network).
Sometime between March 9 and March 18 - I make a few more phone calls. And we run out of her meds.
Mar. 18 - The pharmacy calls to confirm delivery of meds for the next day (but the meds are suspension vs. tablets, which is incorrect).  They said that the pre-auth was written for suspension, so now they need a new pre-auth for tablets (which is what she was on for the previous year).
Mar. 19 - I speak to the same nurse from days ago and explain the issue.
Mar. 23 - Pharmacy calls to say that they received the correct pre-auth and are overnighting he correct meds.
Mar. 24 - I receive meds.

Are you kidding me?  It took a MONTH for me to get her meds - that she's been taking for a year?! Holy cow.

Okay, now that you know those things, let's go back to Thursday, March 19.

This is what Harlie looked like after I turned her screws that morning...

Harlie had some sutures in one incision that had to be removed 10-14 days after surgery.  Tom and I tried to do it ourselves on day 11 or 12.  It was too far gone, the sutures were buried under her skin in some areas.  So, I called her pediatrician's office the next morning (March 19).  I told them I needed her sutures removed and I needed her to look into Harlie's ear - there appeared to be blood all in it and her hearing was still not back to baseline.  She only has one ear canal, so I think the care of this ear is pretty important.  They did not want me to bring her there.  So, they called one of her local docs at VCU and got us an appointment to see her for that afternoon.

After calling her pediatrician about the sutures, I went on a bike ride.  I'm trying to keep my mental health in check, after all. Keep in mind that we had run out of her meds the day before.  During the first 15 minutes of my ride, I had to pull over four separate times to answer my phone.  All were Harlie-related phone calls that I couldn't miss.  One was about her meds.  One was her doc's office telling me that we had an appointment for 1:30 that day.  Beggars can't be choosers, but that meant that I had to turn around and end my bike ride way early.  So much for that mental break...

I took her downtown for her appointment - her first outing since we got home from Boston. As soon as we entered the building, I felt like I was risking her life by being out of the house. I also felt like we were kind of a hot mess.  She looked swollen, and miserable and I had several bags and her oxygen tank.  I was surprised at how many people were there.  How did these parents get appointments for their kids?  I just wanted them to call her name so we could wait in the exam room instead of in the main waiting area with everyone else.  Once in the exam room, I could overhear a triage nurse returning/answering phone calls from parents.  It is so weird to hear a medical professional urge people NOT to bring their kids in.

Anyway, her doctor came in and one of the first things she said was that she couldn't believe that Boston did this surgery with the Covid-19 situation brewing "especially since they are week ahead of us".

Now, this might seem innocent enough.  But, here's the thing - it is already done. I can't go back and do it differently. We also waited nine months for this surgery - so I get why they didn't want to cancel it - especially considering none of us have ever lived through anything like this before.  We never even had a conversation about it. Heck, we could all Monday morning quarterback all day - but that feels like a waste of energy to me.  We made the best decisions we could with the information we had at the time.  Any kind of criticism of the surgeons/hospital that we chose for her is just not helpful - at all.  Heck, we chose this hospital for her craniofacial issues in 2012, after two failed attempts at a different hospital. I'm not going to let anyone make me second guess our decisions.

Anyway, it wasn't a great way to start an appointment - especially when I was already feeling very alone in her medical care. And tired.  And sleep deprived. And hungry (it was after 2pm by now). So, then she started to take the sutures out - I had to hold Harlie's hands down and lean her head into me (precariously so I didn't poke myself with her metal or hurt her by touching her metal rods) to try to keep her still, while her doctor poked at her incision. Well, she didn't poke - she was trying to gently remove the sutures - but that's not how Harlie felt, I'm sure.  So, I felt compelled to tell her that we already have to hold her down and ask her to be still while we hurt her, two times per day. We were two weeks into turning the screws and still had a week to go.  I just wanted her to understand why she was being like she was.

After she was done, I don't know what happened to me and I don't think it has ever happened before - but I started to cry.  Ugh!  And once I started, I felt like I wasn't going to be able to stop.  I gave Harlie her headphones and tablet and stayed behind her so she wouldn't see.

Her doctor just kept talking - like I wasn't crying at all. She never acknowledged it in any way.  She told me that she could remove the hardware here if we are unable to return to Boston.  I'm guessing this was supposed to be comforting to me.  But, it really wasn't. And that had nothing to do with her. I want the surgeon who put it in to take it out.  And that should be something we can rely on.  Choosing a surgeon and a facility isn't something that you just enter into lightly.  And changing it mid-stream isn't easy (or expected). Sometimes I just can't believe this is our life right now. It is so unreal. She left and a nurse came in to give me some paperwork.  While still crying, she handed me the papers and told me to have a good day. 

I collected myself as best as I could, and we left.  Walking out of the hospital, pushing her, carrying oxygen, etc. and crying - not my best day.  I got her in the car and headed home.  I wasn't saying anything, and Harlie was on her tablet.  About halfway home, Harlie said, "Mom."  I said, "Yes, Harlie?" She said, "I love you."

I guess I don't hide as much as I think I do. And maybe that was her way of telling me she understands that I have to do things to her that she doesn't like.  And she forgives me. I don't know, maybe I'm over thinking it.  Maybe she just thought I needed to know/hear it anyway.  Doesn't really matter - it was what I needed for sure.

I'm happy to say that I haven't had another day quite as bad as that one.  Not yet, anyway.  Most of what was bothering me that day is still true today.  But, since then, we have stopped turning the screws and that has been hugely helpful - to all of our spirits.  And I was able to have a video conference with her cardiologist in DC.  She is still up three pounds from her weight prior to surgery on March 6.  So, he put her back on Lasix for a while.  It does seem that fluid is an issue after she goes through something a bit taxing/traumatic on her body.  And I've had several phone conversations with her pediatrician.  It is just nice to know that someone hears me.

And I've had a video conference with her surgeon.  He has been very understanding and empathetic.  Although, he said that he needed me to know that her hardware removal might not be able to happen as scheduled.  They have cancelled all cases through April.  Her surgery is scheduled for May 12th.  But, it just depends on how things are there by May.  He said that while he could certainly argue that leaving the hardware in is risky, bringing her to Boston and possibly exposing her to this virus could be way riskier.  His words - we do not want her to get this.

That is a hard fact to live with - knowing your child is the vulnerable population.  When I see people together, not staying home, not being very strict with the whole stay at home thing - it makes me mad.  And jealous.  They have the luxury to break the rules because they don't have a medically fragile person in the house.  They don't have the same consequences. We don't have that luxury.  We cannot take chances.  The consequences are too great - and that thought keeps us awake at night.  No lie. 

I know this quarantine thing is hard (I miss my family and friends, too). But, if you're doing it right, I thank you (along with all my other friends who have medically fragile children).

Okay, that's it for now.  Thanks for reading and thanks for trying to understand our nutty life.

Much love,
Christy xo

Three weeks down, five to go.

I have started so many posts over the past three weeks... but they just seemed to go on and on and I couldn't stand to proof read my own writing!  Every time I go to write, it becomes too hard, too overwhelming, too painful, etc. and I have to stop.

I started this post last Friday - when we were three weeks down, and had five weeks to go, hence the descriptive title.  It is now Thursday, April 2nd and tomorrow marks four weeks down, four weeks to go.  Woohoo!  Anyway, I'm going to go back and try and finish this post TODAY.  Here's what I started last week...

I'll try again and I'll start with some good stuff.  I am so happy to report that we are DONE turning her screws!!!  Woohoo!!

We went to turn her screws on Thursday night (March 26), and Tom only got one turn in, when it stopped turning.  The device gave all it had - we turned it until it couldn't turn anymore - about 25mm in length! We knew it was getting close as the last several turns I could feel more and more resistance.  Plus, we had to write in the last few days as the chart stopped at March 21.

It was slightly demoralizing to go off the chart, but we trudged on anyway.

I just want to point out that in my last post that I hoped we would be done by then.  So, we had to do something we all HATED, that caused pain for Harlie and expected to be done with after two weeks, for one more full week.  That just sums up how we live sometimes.  Talk about being forced past your limits.

Now I'm afraid her jaw is too big.

Haha!

Honestly, I'm afraid of everything.  Just for fun, I'm going to make a list.

I'm afraid...

It looks like it worked, but it really didn't.
We turned the screws too many times and her jaw will be too big for her face.
She will never look like she used to. I have loved all her faces, and I'm sure I'll love her new one, too.  It is still so hard. We have no idea what she will look like when everything settles down.
I will wake up and walk into her room and see her face swollen with infection.
I will take her temperature, and she will have a fever.
That if something bad happens, I won't be able to get her where she needs to be.
That if something bad happens, I won't know where she needs to be! (VCU, DC or Boston?)
That her doctors will be unavailable to her for her regular issues.  Her heart, her lungs, etc. does not know that there is a virus going around and that they should cooperate.
We will run out of toilet paper.  I remain baffled that there is still a toilet paper shortage. I bought some from Costco sometime before Harlie's surgery (now three plus weeks ago) and I have been unable to find any since.  Thank you to my friends who have given us rolls.
Tom's 100% commission job won't pay the bills, despite his hard work.
We will run out of antibacterial wipes.
That they will cancel summer camp for the boys.
That one of us (then all of us) will get Covid-19.
That Harlie will get Covid-19.

The other night I was tucking Harlie in, and she asked me what I am afraid of.  There was no way I could be honest with her. I kind of looked like a deer in the headlights - then Harlie said, "You're afraid of snakes."  I said, "Yes, I am afraid of snakes."

Anyway, now we just wait and hope that nothing bad happens between now and May 12th (when we are scheduled to get her hardware removed).  I don't know why, but I feel like I am a pretty positive person.  But, based on prior experiences, I can't help but think that it is very unlikely that we will go five weeks with no issues.  But, hope is a funny thing.  And so we will continue to hope...

The pin site cleaning has gotten way better.  There is very little drainage, so we can clean them once a day vs. twice a day, which is so great for all of us.

This is Harlie cutting down some of the flowers her and her teacher made to help her count down the days till May 12.

This is her "celebrating" being finished with the turning.

It is hard to share some of her photos, because I feel like they don't represent who she is.  She doesn't look like herself - in appearance or spirit.  The lack of her spirit is what I see most in these pictures.  I can see she isn't happy, even if she is smiling.  This kid is dealing with some big emotions - mostly on her own.  We tell her we love her all the time and I know she knows that.  But, she lacks the language to fully communicate how she is feeling so she just deals with it herself.

My Mom sent her some Lego sets to keep her busy and hopefully get her mind of how she feels.

A kind neighbor put a care package on our front porch and there was a crystal puzzle in it.  It is a mama and baby giraffe.  She loves it. Thank you, K.!

And she got some cute cupcake earrings that she is saving for after the metal comes off.  Thank you, E.! So cute.

Okay, I'm going to end this one, finally.  And I'll start the next one and hopefully, it won't take me another week to finish it.

Thanks for reading and for all the love and support!
Much love,
Christy xo

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 times.  But, it has been hard to write because I've had not much to be positive about.  This has been so incredibly hard on all of us.  I can tell you at least three of us have cried more than once.  And that almost never happens. And, needless to say, the craziness in the world right now has NOT been helpful.  I'll save some of that for my next post.  Here's the basics for now, until I have more time.

We left the hospital on Thursday, March 12.  Dr. Resnick stopped by and we went over our instructions one more time.  My main concern is infection - there are 8 pin sites that I have to clean twice a day.  So, what if she gets a fever?  Where do I take her?  Our local hospital?  Children's National in DC?  Boston?  And what if it looks infected, but there's no fever (especially since she is on Tylenol and Motrin around the clock)?

We've had several experiences with Harlie developing infections post-operatively, with no fever.  Those have both resulted in scary situations (cardiac code in the OR after jaw reconstruction and an infection in her back after spinal fusion which resulted in an emergency surgery).  Those were both really traumatic experiences for me - as I believed there was something wrong, but it was hard to get her doctors to think the same.  Here is the post where I posted a picture of her infection (again - with no fever!)  In both situations, she had to come home with a PICC line so we could give her IV antibiotics for six weeks (since they were both bone infections).

Anyway, those traumatic experiences don't go away.  They are still fresh in my mind as if they happened yesterday.

Back to her leaving the hospital - I gave her a shower there and got her all clean and "ready" to travel home.

Her team there was so great - I can't say that enough.  They got all her stuff ready so that we could leave whenever we were ready - and didn't have to wait on them.  And they came by to say good-bye.  They were all so compassionate and kind.  I know it sounds odd, but you don't always get that in every doctor - even in pediatrics.  Some doctors just stick to doing the medical part and don't really think past that.  And what I mean is how hard this is on the patient - and the parents.  Not every doctor even acknowledges that part - these all did.  It really makes a difference.  It makes the hardship of traveling there worth it.

We got an Uber and went back to the Air B&B to pack up and let Harlie rest and relax a bit before our flight to Richmond (I think we took the 4pm flight).  When we got her inside I noticed she was breathing really hard.  I checked her sats and they were 63!  So, I put her on oxygen.  Her docs said that her lungs sounded great just before we left, so I was kind of surprised at the low number.  Usually low sats for her mean crappy lungs.  But, she's just been through a hard surgery and was pretty inactive for a week.

Going through the airport wasn't as bad as I was expecting.  The airport staff (at security) was really nice.  Although, they always check her wheelchair pretty thoroughly for explosives.  I couldn't help but wonder why a person would put their kid through that surgery (which was clearly visible to anyone) and then blow up a plane, but whatever.  I know they can't think like that.  I finally went and got TSA pre-check before this trip, so that does kinda help the process a bit.

Coincidentally, some of our friends were leaving Boston on the flight after ours, but they got there early, so we were able to see them for a few minutes.  That was nice - thanks, Rob and Kathleen!

The flight home was not even close to full, so that was good.  We have never needed her to be on so much oxygen during a flight.  I had to turn it up several times to maintain her sats in the 80s.  The higher the liter flow, the faster you go through the battery.  Unfortunately, we went through both batteries and it beeped from landing to the car where Tom could plug it in.  That never helps our stress level.

She got some cool gifts when she got home - pajamas, markers, Legos, etc. Here she is, despite feeling like crap, drawing rainbows.  That girl.

When we got home, we were both so tired.  We put her to bed, and we went to bed.  And she woke up crying several times during the night.  While in the hospital, she was on Tylenol and Motrin, alternating, around the clock.  We went to bed and skipped a dose.  That was not smart.  We just weren't thinking.  So, she got behind on her pain meds and we had to work all night to get her okay again.  Since then, I have set my alarm to for midnight and 4am to give her meds.  Usually I do the midnight one and Tom does the 4am one.

The other night, my alarm went off at midnight and I shut it off and then fell right back to sleep.  At 1am, she woke up crying in pain.  Ugh!  This is so hard!

The pin site cleaning seems like it is getting better.  It used to take several of us, but now one person can do it alone.  She doesn't like it - and lets you know it.  But, she doesn't need someone to hold her hands down anymore.

The turning of the screws is pretty brutal.  There's only one (thank goodness) that is particularly painful for her - and that is the front left one.  We have been turning the front two pins, one turn each, two times per day.  And on every third day, we turn all four pins once, and then the front two twice per day.  On the day we turn all four pins, I take pictures of Harlie - front, left and right and email them to her surgeon.

Her teeth appear to be more unaligned and it is like her jaw is shifting to the right.  It appears that the left side is advancing more than the right side.  So, he said to make two turns on each side in the morning and then at night, just turn the right side one time.  That is actually working better for us - as we don't have to turn that left side at night (that one is the more painful one so it is nice to not have to do that to her before bed).

I think if I remember correctly, in the PowerPoint presentation, our goal was a 12mm advancement.  Here is our log:

I took that picture on the 20th, so I could send it with her photos (so it is a day behind now).  We were really hoping we would be done with turning today.  But, in his response to my email yesterday, he wants us to continue, at least until we turn all four pins again (which is Monday).  I will say that turning them twice in the morning and only turning the right one in the evening works better.  I'm able to give her one less dose of Oxy that way, which is good.

Of course, last night, after I turned her right pin, she said, "We are done tomorrow and this nightmare will be over!" I just looked at her and then said, I'm sorry.  We have to keep on for a few more days.

I have whined a bit to her surgeon about how hard this has been/is and I have to give it to him - he acknowledges my feelings and is compassionate and empathetic.  Then he says, "keep going."  Okay, if we are going to do this, I want to do it best we can.

At this point, we are terrified this won't work.  I suppose we would've been anyway.  But, seeing her jaw go to one side has made us more afraid.  He assured us that is fine and fixable and doesn't indicate that we are not making good progress.  So, that is good.

The other night, maybe 3 or 4 nights ago, when I was putting her to bed, she said something to me.  I don't even remember what it was.  But, when she started to speak, she made a sound.  It sounded like her real voice - the voice we heard when she didn't have her trach.  It was only a split second of that sound.  But, I really don't think I made it up.  I really think I heard it.  And I am hoping that it means that more air is passing up through her vocal cords, which would mean that there's been enough advancement for there to be a difference in her airway.

It is really hard to confirm that right now because she is having an issue with her breathing right now.  I emailed her pulmonologist earlier in the week and he gave me an explanation that sounds right.  She's been on supplemental oxygen since her surgery.  But, her lungs sound good.  So, that's weird.  So, I reached out to him and gave him an update on what's going on right now.  He asked if she is in pain and are we managing that pain with opioids.  Yes to both questions.

He said that she probably has hypoventilation due to the opioids.  The treatment for hypoventilation is supplemental oxygen - so as long as I can do that - her pain management is more important.

So, until we are done turning the pins and she is more comfortable, I don't think we can test her airway out.  Until then, we hope like crazy that all of this is successful.  The thought that we could have done this for nothing is just too much.

I'll leave you (for now) with one last picture.  I took this photo a few nights ago.  I stopped and got her a bath pillow since she's been wanting to take relaxing baths lately.  It is crazy to see your child's face literally change before your eyes.  And for a brief moment, I thought, "we're going to be okay."

I say "we" because if she's okay, we are okay.  If she's not okay, then we are NOT okay.  My moments of comfort are fleeting, often refilled with fear very quickly.  But, with any luck, in time, the fear will be replaced with hope - even if it is moment by moment.

She doesn't even look like that picture anymore.  Her face appears more swollen and round again.  Yes, her face is changing each day, and it is not easy on this mom, I can tell you that.

I have so much more to say, but at least you're updated for now.  Also, one last thing - if you have reached out to me via text, email, etc. and I haven't responded -  I am sorry.  I find it so difficult to answer how we are doing with "crappy, really, really crappy."  But, I cannot lie and say we are fine.  So, I haven't responded at all. But, I can tell you that I appreciate you caring and I am feeling your support - even if you don't know it.  Thank you for the love!

Much love,
Christy xo

Day 5

Hi,

So, I suppose this is going to be a bit of a roller coaster.  Yesterday was way better than today.  Today has not been a good day.  And when Harlie doesn't talk - it is a really bad day.  And she's not talking.  Insert super sad face here.  I asked her why she didn't want to talk - I said is it your lungs, throat or face?  She pointed to her face.  I think she hurts too bad to talk. 

She didn't tolerate her wound care or turning of the screws well at all.  It was rough.  I turned the screws and her nurse did the wound care.  I just couldn't.  And I don't need the additional practice.  Today, I needed the break. 

Whew, honestly, I am having a really bad day.  I am feeling so mad. 

One of her cardiac scripts is requiring some extra effort to refill and I am having a hard time getting that done.  I've made calls and sent emails. I don't have the energy to explain why it is difficult - but please know that it shouldn't be.  Especially right now.  For crying out loud, I just want her stupid meds so that she has them.  I think there are too many docs in the kitchen.  Is that not how the saying goes?  Oh, well.  Things aren't normal in my world anyway.

And on occasion, I see snippets of the mass hysteria that is the Corona Virus.  And a shortage of toilet paper?  WTF is going on out there? I go away for one week and this happens?  And I have NO idea how much toilet paper is in my house!  Why the fuck is this a concern in my life right now?!?!

First of all, welcome to my world, people.  We live in fear of EVERY virus - because it doesn't matter what it is - it can put Harlie in the hospital - or worse.  That is our reality.  And that has been our reality for over 13 years.  You don't see me hoarding hand sanitizer and toilet paper and crying every day.  Nope, I just go about my life, washing my hands and trying to laugh despite the immense amount of CRAP cards that we've been dealt. 

Second of all, why toilet paper?!  This isn't a GI bug, people. 

So, I asked plastics if we have to keep cleaning her pin sites twice a day.  This is agony for her.  Maybe due to pain, maybe anxiety, maybe both.  Regardless, it is agony for both of us.  The answer was a solid yes.  I exclaimed DAMN IT! Then, I asked for how long.  Based on my reaction to her first answer, it was clear she didn't want to answer my second question. 

Sigh, we will do what we have to do.  And we will hate it.  But, we will do it. 

I'm not sure where plastics gets the feedback that kids tolerate jaw distraction without much pain.  That is clearly not my experience.  Of course, we have a kid who has had well over 60 surgeries, so maybe she is just clean out of tolerance for anything.  Me too, by the way.  I'm over this.  I'm over how hard life is.  I'm over hearing healthy people complain about temporary discomforts. 

The next time life feels difficult, try asking yourself this question... Is this a life changing event or is it a temporary discomfort?

Then react accordingly.  It has gotten me through some hard times. 

So, something positive...

Harlie got to pick out something from the Treasure Chest yesterday.  She picked this building thing.  Apparently the instructions weren't as clear as Harlie needed.  She struggled for a little while. 

Then she got her tablet and typed the name of the toy into You Tube.  She found a video and then built this cute car.  I love it when she shows me how smart she is. 

Tom just got here.  Thank God.  He makes everything better. 

Another positive thing... Harlie was trying to tell Tom something she wanted to do with the car she built.  She was struggling (since she's not talking).  So, she went to her tablet and pulled up the sand app (I haven't seen her open that app in ages - it is for drawing in the sand) and then drew what she wanted to do. 

It is a ramp, showing that she wanted to make the car jump from her bedside table to my table.

Damn, I love that little problem solver. 

She got to open a few more people today.  There are three left to open.  We'll save those for after tomorrow's pin turning and cleaning.  They look so cute on her wall. 

Oh, the CT scan was good, so we are planning on taking her home tomorrow.  While I'm certainly glad to leave the hospital, I can't help but feel a bit nervous taking her so far away from her doctors.  Hopefully, we won't have any issues. 

Okay, that's it for today.  I need to go turn her screws and then Tom and I are going to dinner. 

Thanks for everything!

Much love,
Christy xo

Jaw Distraction Post-Op Day 4

Wow! Today was a much better day. 

Harlie's pain is more controlled.  And they told me that they will send us home with some Oxy, so that's not an issue. 

Last night she had some beats (8 or 9 I think is what they said) of ventricular tachycardia. I don't think I remember that ever being an issue.  So, they interrogated her pacemaker and said they are going to send an email to her doc in DC to let them know.  And I need to follow up with that when we go home.  Hopefully there won't be anymore issues with that, because I just googled it.  No thanks! We are full of issues right now - not accepting anymore at this time. 

I turned the screws this morning and that went okay.  She isn't exactly cooperative, but it was doable with someone to help hold her arms/hands down.  And I cleaned all of her wounds.  They are still oozing a little, but looking okay for the most part. 

Her plastic surgeon came to see her today.  He turned the other two screws for me. I was a bit nervous since they haven't been turned at all.  I was a little worried they would be harder to turn and that I would hurt her really bad.  He said they turned fine.  But, I don't have to turn them again until he tells me to.  He wants to see a CT scan before she goes, just to make sure everything looks good.

So, we are really close to being able to go home!  Woohoo!  I do think she will be so much happier at home.  Although, her nurses are doing a really good job spoiling her here. 

She got her CT scan at around 5:30 or 6pm tonight. 

Then she came back to the room and wanted to draw. 

And she has smiled a few times today. 

She is really not happy about the constant drooling.  She cannot close her mouth (and her lips don't touch).  But, if they get the growth they want, that will be much easier when all this is done. 

Her home bound teacher, Ms. Wead, made Harlie a bunch of "people" for Harlie.  Each one is individually wrapped and she gets to open a few after she has to do stuff she doesn't like.  They are so cute!  She loves opening them to see who is in there. 

She hasn't said anything negative today.  She is definitely getting back to her good-natured, easygoing, fun-loving self. 

Ugh, I just turned the screws again and she is not happy anymore.  I hate doing that to her.  Her nurse is going to give her some meds, clean her wounds and then let her go to sleep for the night. 

Tom is going to fly back up tomorrow and we are going to get everything ready to take her home on Thursday.  Her surgeon still has to look at the CT scan and give his okay for us to go.  But, I assume that will happen tomorrow just fine.  Hopefully all looks good on that scan! 

My mood is so much better now that Harlie is more herself.  I was really feeling defeated there for a few days.  It is very hard to watch her go through so much.  And each surgery/hospitalization just builds on the last.  We go in heavier - and with more memories - each time.  So, thank you for all the kind words of love and support.  I promise you - they help me get through. 

Much love,
Christy xo

Jaw Distraction Post-Op Day 3

Hi,

I am going to try and be quick tonight.  It is already 9:30pm and I'm just sitting down to write. 

Overall, today (Monday) was better than yesterday.  The smaller dose of Ativan was better.  She definitely talked more.  And she complained more.  But, that's okay.  Definitely better than not saying anything at all. 

Tom left this morning.  It is always hard to see him go. 

That was the first smile we've gotten out of her. 

After he left her nurse and I got Harlie up and in the shower.  She was miserable and hated every second of it.  She saw herself in the mirror in the bathroom and she said, "I am so ugly." 

Ugh. 

Of course I told her she wasn't.  I told her I know you feel terrible and feel like you look terrible.  But, it is temporary!  You won't look like this - or feel like this - forever.  But, to her, two months feels like forever.  And this sucks today.  And it will suck tomorrow.  And the day after that.  I make sure that I let her know that she isn't wrong to feel whatever she feels. And then I tell her I love her and that I'm sorry - but we will get through this.  And one day, it will be over.

With any hope, the worst is behind us.  Hopefully, each day will get better from here on out.  So, it won't suck THIS bad for two months.  Maybe that's something. 

After her shower, I cleaned all of her wounds and changed her trach ties.  And I brushed her hair and braided it. Her nurse found some pjs for her to wear instead of a gown.  I told her I really didn't want to put a shirt over her head.  She left and came back a few minutes later with this solution:

How good is she?!?!  She cut the shirt and that added ties to the back.  I was impressed - and thankful.

Then her nurse asked her if she wanted to go to the play room.  I was shocked that she said yes.  And she walked most of the way there, which is really good!  And they played air hockey. 

After all that, we came back to the room and Harlie wanted to sit on the couch with me.  She got to pick out a toy from a toy chest (she picked a puzzle) and wanted to do it next to me.  Child Life brought a table for me to do puzzles earlier in the morning. 

Once we sat down, Harlie said she was feeling happier.  That didn't last long.  But, at least it is a start.  This is really a tough one for her.

Speaking of tables, I forgot to tell you something funny that happened in the CICU.  Harlie asked for a bedside table.  I don't know who the girl was (I'm assuming she was new?) but when she brought the bedside table, I told her thank you.  Then she said, "No problem! You just press here to make it go up and down." 

It took ALL of my strength not to laugh out loud at her.  Wow, she thought I didn't know how to adjust that table.  Do I look new here?  I mean, one quick look at Harlie should clue you in that this isn't our first time the hospital.  I keep seeing her innocent face showing me how to adjust that table, and I just laugh.  So funny! 

Anyway, at one point, Harlie asked for some arts and crafts stuff.  So, I went down to the gift shop and reluctantly bought her a pen/sketch pad set.  It was more than I wanted to spend and I knew damn well she wasn't going to play with it.  I also grabbed her some Plus Plus blocks (?).

When I walked in the room and gave them to her, she said, "Got anything else?"  Tough crowd. 

But, she played with both more than I thought she would.  And I fully expected to see some kind of dark drawings in the sketch book.  She was pretty mad today and said several times that she was ugly.  When I looked in the book, she had drawn three pages of rainbows.  RAINBOWS! I gotta tell you, I'm not feeling rainbows. 

That girl is something.

Plastics came by early evening and asked me if I wanted to start to turn the screws.  Oh boy.  I suppose I have to do it eventually.  So, I did.  He had to hold her hands down.  But, I turned them okay.  He said that they are comfortable with whatever we are comfortable with as far as taking her home. 

So, our goals are to get her on a pain regimen that works for her and that we can comfortably manage out of the hospital.  She is still getting Oxy, and her nurse doesn't think she can have that after discharge.  So, I think they will want her to go more than 24 hours without it. 

I'm hopeful we will be able to be home before the weekend. 

So far, I am really happy with all of her care.  Her doctors, her nurses, etc. have all been really compassionate and good to her.  And to me, too, actually. 

So, aside from the fact that my beloved daughter hates the way she looks and feels, I guess today was an okay day. 

Thanks for all the love and support.  I just can't say that enough. 

Much love,
Christy xo

Jaw Distraction Post Op Day 2

I had a rough time getting up this morning.  Tom offered to go to the hospital and let me stay in to sleep a bit more.  So, I got to move more slowly, which was really nice.  I forgot to mention that when Tom went to go get a better bottle of wine the other night, he returned with some flowers, too.

So, I got to drink my coffee, listen to some music and look at some pretty flowers before I got ready to go to the hospital.  I really felt daylight savings this morning. 

Anyway, how's Harlie?  Well, she's a different girl today.  She has hardly spoken a word. In fact, she has only answered questions with one word answers.  Sometimes, she doesn't even answer at all. No complaining - at all.  She's not even itchy. 

Ain't that something?  This feels worse than her complaining all day!  At least she had her personality.  I asked her how she was feeling and she slowly put her hand to her trach and whispered, tired. 

Tom said that they wanted her to sit in the chair for a little bit.  She protested, but then gave up.  Then she fell asleep. 

She's been pretty much sleeping all day.  I don't think she had a great night last night.  Her nurse said she woke up a lot throughout the night. 

Her blood pressures have been high (she normally runs low).  They were going to increase one of her meds for this, but gave her Ativan for anxiety and her blood pressures came down. 

So, I don't know if she's quiet because of the Ativan or what.  I can tell you she is NOT like herself at all.  If she were like this at home, I would say she's coming down with something.  But, again, we aren't familiar with Ativan.  They are going to decrease her next dose to see if that helps. 

She could also be mad at us.  Or really sad.  Or both.  Ugh. Our poor girl.  This is so hard!

They are sending her to the floor today.  I'm trying hard not to stress out about this.  Typically, when the floor is mentioned, I start arguing to take her home.  At home she can get one on one nursing - totally not the case on the floor.  But, I can't really think about taking her home yet.  She is definitely not ready.  And plastics hasn't even released her yet. 

Plus, when we leave, I need to get her to the airport, on a plane, then home.  That can be tiring for healthy people.  Plus, going through the airport and getting on the plane is going to be hard emotionally.  We get stared at on a good day. 

I remember when we left Boston Children's after her last distraction surgery in 2013.  A girl standing in line with her parents in front of us started crying as she stared at Harlie.  I get it.  It isn't every day you see a girl with this kind of head gear (plus the trach, wheelchair, good lookin' parents, etc.).  Haha! We're going to look like celebrities gone wrong walking through the airport.  Oh, grant me strength!  And please let people be kind! 

So, thinking ahead, I thought I should start to get used to taking care of her and all her stuff.  Plus, I was hoping that me cleaning her wounds would make her more comfortable.  I have to clean her trach wound all the time at home, and she is really good for me when I do it.  So, her nurse let me take the lead.  It was not fun.  I wouldn't say she was good with it - but she was better than yesterday. 

So, it looks like she is being moved to the cardiac floor around 6pm tonight.  Now I just pray that she gets a private room.  After spending years of our lives in the hospital, I think we should have some kind of pass that grants us only private rooms from here on out.  Honestly, every hospital should get rid of shared rooms anyway. 

Whew! She got a private room!  Her nurses just said that it is a nice room, too.  So, she will get moved soon. 

She is settled in her room now.  And it is a nicer, quieter place to hang out.  There's even a small fridge in there! And we have our own bathroom, with a shower.  One of her nurses today said she remembered her from two years ago. 

Tom went to dinner with Mike (he leaves to go back to Pittsburgh tonight) while I stayed with Harlie to get her settled.  Her nurses took out one of her IVs (it stopped working) and she wasn't happy about that.  Her nurse tried to distract her by asking her what her favorite movie was.  I had to coax her to try and answer.  When she did, it wasn't anything understandable.  Then she signed "Where's Daddy?"  So weird.  She hasn't signed that in years.  She has NO energy to speak at all.

I'm really hoping that tomorrow will be a much better day with that Ativan out of her system a little.  They are going to cut her dose in half tomorrow.  Plastics came by to turn her screws again.  She handled that pretty well, all things considered.  Maybe she was too tired to fight.  I took this picture before he came tonight, but here is her chart. 

So, we have a ways to go. 

She is really, really miserable.  I just keep telling her that each day will get better.  And one day, all of this will be behind her.  But, oh boy, today sucks so bad...

Her night nurse came in and I asked her how many patients she has and she said just two.  Whoa!  That is awesome.  And she said she's an ICU nurse and is floating to the floor tonight.  What luck!  So, she told us to go back to the apartment tonight and get some rest.  Tom is flying home tomorrow.  And he will come back next weekend (or earlier if need be). 

Well, that's all I have for today..  Thank you for all the love!

Much love,
Christy xo