Harlie Update

Hi!  It has been a really long time since I gave you a general update on how Harlie is doing.  I appreciate all of you who have emailed me, asked me and prodded me to sit down and write.  I am grateful that you care as much as you do. 

Since her hardware removal surgery in May, she's been quite busy.  Well, we've all been a little busy.  Since June 1st, I have taken myself or my kids to 31 in-person doctor's appointments.  In addition to that, I've had 13 virtual appointments.  I'm lucky to still have my job!  Anyway, I'll focus on her medically (will update on general life later) and summarize by area:

Hearing

Back during Harlie's jaw surgery in March, we had an issue with her right ear (her hearing ear).  Her jaw surgery created a lot of bleeding, and the blood filled her ear canal.  I noticed that week of post-op that her hearing was way worse than normal.  Surgery was in early March and I couldn't get her in front of her audiologist until June!  This was so frustrating.  I guess someone (with good hearing) said hearing wasn't essential during the beginning of Covid.  Communication is so incredibly important and wow, life is so much more difficult when communication is limited.  

Anyway, her hearing results were not good.  Her hearing decreased, diminished, got worse?  We were hoping that it was due to a blockage in her ear canal (dried blood, hopefully?).  So, we scheduled a follow up for a few weeks away and started putting drops in her ear to help dissolve what was there.  

She ended up having a DLB (direct laryngoscopy and bronchoscopy) with her ENT in DC and I asked him to take a peek in her ear while she was under anesthesia.  He did and said he removed a clot.  Awesome!  

So, we returned to have another hearing test.  Insert sad face here.  No difference.  Dammit!  Her audiologist said that sometimes when kids have growth spurts, their hearing can get worse.  I'm assuming that she's talking about kids with hearing loss only.  As a bonus (said so sarcastically) - I didn't see any evidence of a growth spurt, either.  

So, she ordered her a new hearing aid.  That was kind of hard for me - I had to decide between a rechargeable hearing aid or the kind we had with batteries.  I know that sounds dumb, but I always have hearing aid batteries with me.  The thought of having to remove her hearing aid and let it charge seemed like it would likely be a problem.  But, she told me that eventually all of the hearing aids will be rechargeable.  So, I guess I should try to adapt anyway.  I will say that the new one has bluetooth.  That is very cool because now Harlie doesn't have to wear headphones when she is on her tablet.  So, we lose having to charge her headphones, but gain having to charge her hearing aid.  

Her hearing aid charger is a case that you insert the aid into and the case has a plug.  We have one case.  And we went to my sister's lake house for our first weekend away with the new aid - and you can probably see where this is going... we left the charging case at home.  Ugh.  See, I would have had batteries with me.  And, even if I forget batteries - they are the ONE medical thing you can buy almost anywhere.  

The audiologist also went on ahead and reprogrammed her current hearing aid for her new hearing needs.  So, we at least have a back up now, which is nice.  Of course we didn't have it with us when we went out of town.  Rookie mistake!  Luckily, my niece was coming to the lake the next day, so she stopped at our house and grabbed her stuff for us.  So, I've ordered another charging case to keep in her bag.  And as I'm typing this I just remembered that it is in and ready for me to pick up.  Like weeks ago...

Her hearing loss has always been a true loss - it dominoes into more losses (speech, communication, language delays, etc.) so it is scary to think about it continuing to get worse.  For example, if we need to comfort her in the middle of the night - she now cannot hear a thing we say without her hearing aid.  She used to hear if we spoke a little loud, slow and clear.  Now, she hears nothing.  One morning a couple of weeks ago, she came into our room at 4am.  She woke me up and said something, but I couldn't understand her.  So, I said, "What?"  And then she said, "What?" And then I said, "No, I'm saying what to YOU, tell me again."  And she said, "What?"  And then she walked out of the room. Ugh.  It makes me so sad when she feels like she isn't heard.  

So, yes, I think her hearing is really important. 

Eyes

Back in the fall of 2018 we saw her opthamologist.  She recommended that we put eye drops in her left eye (the one that doesn't close all the way) several times per day.  This might not sound like a big deal - especially if you only have this one task to do.  But, man, you should see all the crap we have to make her do everyday.  And she hates eye drops.  Anyway her doc said that she has some scarring on her cornea (in her left eye) in several spots - due to her being in several medically induced comas (over 30 days total).  It was a constant battle keeping her eyes closed when she was in a coma.  All it takes is one piece of dust and when they close her eyes for her - they've closed it right in there.  Anyway, that was in 2018.  

So, a few months ago, she started telling me that she needed glasses.  I'll admit - I was suspicious.  This girl loves her accessories, and I fully believed she just wanted another accessory.  After she kept on complaining, I figured it was time for a follow up anyway.  I'll also admit, that I was not the best at putting those drops in her eye and I didn't want to get scolded by the doc.  

Anyway, we went and as you might've guessed - she needs glasses.  Insert face palm here.  Luckily, she is nearsighted and she only really needs them when she is watching tv (or if she were in a classroom, which she isn't). And now, she needs one kind of drops 3-4 times per day and a different kind of drop at night before bedtime.  

Her doc didn't scold me, either.  She was very nice and empathetic.  I really like her because she looks at Harlie as a whole person - and not just at her eyes.  She can see that we have our hands full and that Harlie is well loved and cared for.  

Airway/Jaw

So, as I mentioned earlier, we had that DLB with her ENT in DC.  This was her first one with Dr. Preciado since her jaw surgery in Boston.  Here is where I talked about her airway and how I was looking forward to Dr. Preciado giving me his opinion.  

Anyway, he didn't think her airway was as small as Dr. Lee (the ENT in Boston) said it was.  So, that is promising.  He tells me he has hope that he will be able to get her decannulated one day (get the trach out).  And I want to believe him, I really do...

He also gave me his blessing to go on ahead and start working toward the next surgery.  The next surgery is essentially joint replacement surgery.  And after the jaw distraction surgery, we were thinking we needed to give her (and us) a big break.  However, we can't wait too long because any growth we might've gotten out of her distraction - we don't want to lose.  And it takes months to prepare for this next surgery.  Basically, if you want to make it simple, distraction was phase 1 and joint replacement is phase 2.  Pointless to start the process and not finish it.  So, proceed we will.  She had a CT scan a month or so ago and the company will use that scan to fabricate custom joints that are made to fit in her jaw.  

The fabrication takes several months.  Her Temporomandibular Joint Reconstruction with patient-fitted TMJ Prosthesis (you should've seen my reading material last week!) is scheduled for April 12 at Boston Children's Hospital.  

Spine

We also had her follow up appointment with her orthopedic surgeon in DC.  

He said that he thinks her quality of life will improve if he does another spinal fusion surgery.  Her kyphosis scoliosis forces her forward, into a bent over position.  This makes it very hard (honestly, impossible) for her to stand for any length of time.  I'm talking a few minutes, at most. This also makes it very difficult (honestly, impossible) for her to walk any distance.  I'm talking a couple house lengths, at most.  

But, he wants her to grow as much as she can before he does it, since after he fuses those vertebrae they cannot grow anymore.  So, he told me to think about it.  We scheduled her normal follow up appointment for some months away and I've been thinking about it.  He said it will be a pretty brutal surgery.  And, not only are we coming out of that horrible jaw distraction surgery, we are gearing up for her joint replacement surgery in April.  Regardless of her growth, I just can't fit spinal fusion in her schedule right now.  So, it is going to have to wait.  

Growth

We went to her appointment with her GI doc and they always look at her growth.  I guess since things are relatively "calm" right now, she said it was time for us to see Endocrinology regarding her growth - or lack thereof.  

So, we did.  Because it was a new specialty to her, I had to fill out new paperwork.  I hate medical paperwork.  I am so over writing the same information over and over again.  Plus, I mean, come on...

That was a pretty interesting appointment.  First, it was pretty impressive that they had taken the time to review her medical history before coming in to meet with us.  That doesn't always happen.  The first thing they saw was her growth chart.

The doc we first met with was a fellow (in her final year, I believe) and she really wanted me to know that she knew her stuff - about hormones, etc.  She was pretty thorough.  After going over the basics of growth plates, bone age, puberty, hormones, etc., her attending came in.  She said she wanted to meet us.  She said Harlie's growth chart was "striking" and after stumbling over her words in an awkward few moments, I stopped her.  I knew what she wanted to say.  So, I said, "You want to know where we've been."  Relieved, she said, "Yes!"  

I told them both that we've had other priorities.  I'm sorry, but there's only so much we can fit in!  And when you've got concerns about breathing, how tall you are just doesn't seem to matter that much. 

I honestly never thought anything else was wrong.  I know that must sound funny.  What I mean is that I just always assumed she was so small because that was all her heart and lungs could do.  She has clubbed fingers and toes because there's just not enough oxygen in her blood by the time it gets to those extremities.  So, how is there enough left over to let her body grow?  

But, they talked about puberty and how important it is for one to go through it.  Duh. She went on to explain to me that it really helps female bone growth since after menopause, women lose a lot of bone density.  I let it go the first time.  But, it was as if she thought I didn't get it or something, so she repeated it but changed a few of the words.  Then I looked at her said, "I don't think that is going to be a big concern for Harlie."  This is why I so appreciate a doctor who is able and willing to step out of their specific specialty and look at the whole patient.  Regardless, I, given all the current life-threatening, life-impacting concerns I have for Harlie, cannot possibly give bone density after menopause a second of my energy.  Moving on...

She went on to talk about her growth and puberty - where we are now and what we can do about it.  Let me see if I can break it down more easily for you.  

Puberty: Girls stop growing after they start their period. Periods usually start about two years after breast buds develop.  Harlie has no breast buds. She is 14. So, does she have at least two more years of growth potential?  To find out, we needed an x-ray of her hand to tell us her bone age.  If her bone age was less than 14, then that would mean she has more growth potential.  And we needed to get some blood work done to see what her puberty markers were and all that jazz.  If she had low to no puberty markers, then we might have the option to give her some growth shots and force some growth and then force her into puberty after that.  

So, we got the x-ray and then did the bloodwork.  

A few weeks later the doctor called me with her results.  

Bone age:  Her bone age is 14.  So no real growth potential there. 

Puberty: According to her lab work - she is in puberty right now.  Haha.  

So, no growth shots and no forcing her into puberty.  There is nothing to do. She is done growing and I don't know what this all means for her breast buds or her period. We have a follow up appointment scheduled in February, I think. 

She is 14 years old.  She weighs about 70 pounds, give or take a pound or two.  She is 4'4" tall.  And she wears mostly size 10/12 in clothes.  She wears size 3 shoes.  

Before you say anything or think anything - this is what I want you to know...

Our children are supposed to grow.  And when they can't do that, it sucks really bad. 

As parents, our jobs are to feed them - so they grow.  It is literally the first thing we do after they are born.  One of the more painful things for me as a mom was the inability to feed Harlie.  I mean, we did, by her g-tube.  But I'm talking about feeding her by mouth and then turning her over and burping her.  I never could do that.  She doesn't know what a cookie tastes like.  She doesn't know what it is like to chew food.  She has never had her favorite meal and then said, wow, that was really good.  

We tried for many painful years to get her to eat by mouth.  But, it just wasn't meant to be. Maybe one day we will be able to try again.  But, chewing is likely a pipe dream.  I have accepted that.  Luckily, you don't have to eat by mouth to have a good life.  

Anyway, we work really hard to feed her via her g-tube.  And I know that sounds weird - I mean, how hard can that really be?  Well, Harlie cannot tolerate a lot of volume.  So, that has always been a big challenge.  We have always given her as much as she could tolerate - sometimes more so.  But it wasn't enough for her to grow. Her heart and lungs are working way harder than they should have to - there's just not enough left over.  

There is no positive to this.  There is no silver lining.  There is no parent on this planet that says, I'm fine if my kid can't grow.  It's all good.  

Will she have to shop in the kid's department for the rest of her life?  

I don't know.  Her body is so crazy, she could have a growth spurt next year for all I know.  For right now, it makes me sad.  But, then I think we need to be grateful for what her heart and lungs are doing.  That is pretty amazing. 

She is happy and she is hilarious and keeps us laughing.  I overheard her during her virtual speech therapy appointment (insert eye roll here) the other day.  

ST:  Harlie, last week you really struggled with ______.

Harlie:  Because it was hard!

ST:  So, we are going to work on that again. 

Harlie:  Can't we do something else?

Just this morning, Harlie asked me if she could make and bring me my coffee.  We told her she could turn it on.  The next thing we knew, she made herself an espresso - and drank it!  I had to laugh because it took me YEARS to train myself to drink coffee.  I had to start with a sugar-filled coffee drink at Starbucks until I could handle less and less sugar in it.  And this girl wakes up one day and chugs a freaking espresso.  

She also breaks my heart on a daily basis.  She had the opportunity to play with a baseball bat and tee a couple of weeks ago.  Apparently she loved it.  So, now she tells us that she wants to play baseball in the spring.  She wants to be on a team. She googled it and found a local little league and showed it to me and said she wants to go there.  She actually said her life would be better if she could play. 

Sometimes, it is as if Harlie has no idea she has heart and lung defects.  The girl gets out of breath walking up the stairs!  And - for real - you think we want her around a ball that could hit her face/mouth?!?!?!  Or her pacemaker?  I mean, we aren't even supposed to let her play any kind of sport where another person or ball could hit her in the chest/pacemaker.  

Look, we let her in the pool, in the lake, in the ocean - all areas of grave danger (and immense joy).  We've put oxygen on her bike/trike.  Tom has taken her "hiking" and we take her camping.  We've let her ride roller coasters (the more gentle ones). We do our best to give her all the experiences we can give her.  Oh, she wants a freaking scooter for Christmas.  Oh, the fear we have of all the bad things that could happen!  Why oh why does she have to want to do things we shouldn't let her do?!  

Luckily, we know a girl. And she runs Jacob's Chance and if we are lucky, they will have Buddy Ball this spring.  Alexa, remind me to call Kate. 

All of this reminds me of this quote I came across a few years ago:

What is stronger than a human heart, which shatters over and over and still lives... ~ Rupi Kaur

To end on a really positive note, one big thing happened in our house last week.  Harlie changed her own trach for the first time ever!  We are so proud of her!

That's it for today.  As always, thanks for reading and for caring about our girl. 

Much love,

Christy xo

My Dad

Wow.  The last time I posted was in May.  That feels like an eternity ago.  The first post after a long hiatus is the hardest.  There have been so many times I sat down to write and felt too overwhelmed to get it going.  There's just so much to say.  And most of it isn't pleasant. 

My Dad passed away on Saturday, September 26th.  He was 92.  

Since Covid happened, we've been able to see him very little.  Here's the brief background story...

In November of 2018, my Mom had spine surgery.  It was during her recovery that we realized how much my Mom had been doing for my Dad.  He just wasn't able to take care of her or himself, for that matter.  So, me and my siblings found our parents an assisted living facility and moved them in January of 2019.  

It was great!  They were in an apartment not far from us and we could come and go and visit them anytime we wanted.  My Mom loved meeting new friends and participating in the activities the community provided.  They played cards, bingo, watched movies, knitted, etc.  It took a little longer for my Dad to warm up to it - but eventually I think it grew on him (especially when he got into a poker group).  

All was good until March 2020, when Covid hit.  They locked down the facility.  No more eating in the dining room - they delivered all their meals and snacks to their apartments.  They were not allowed to leave and they were not allowed to have any visitors.  They were not allowed to visit their friends in their apartments - no contact at all, with anyone, except the staff when they were doing medical stuff or delivering meals.  We could deliver food to them, but it could only be from a restaurant - nothing home made was allowed in.  I have no idea how that was safer.  But I am learning that it isn't always about safety, it is about perceived safety.   One time, during a bike ride, Tom and I stopped at the back of their apartment building.  I called Mom and told her to come to the window.  They are on the 3rd floor.  We talked for a little bit and left.  A few days later, my brother Bruce went and did the same thing.  An employee told him he couldn't do that and told him to leave.  How is talking to our parents from three flights, unsafe?  

After a period of quarantine (I don't remember how long) they had zero cases.  They still would not allow the residents to gather together to visit, play cards or eat.  My Mom could talk on the phone with her friends and began hearing of residents whose health failed/was failing because they were all alone all day, every day.  Covid wasn't hurting them - the prevention of it was.  And somehow that seems to be okay.  I just don't understand how dying from Covid is horrible, but dying from the prevention of Covid is acceptable.  Why is no one talking about this?   

Eventually, maybe sometime in the summer, they allowed them to leave the facility.  So, my parents could go to the grocery store, etc.  But, the residents were still not allowed to gather together amongest themselves in the facility.  I remember during this time, my parents said they would rather be allowed to visit amongst themselves, than leave the facility.  Since they were allowed out - they could still catch Covid and bring it inside the facility - therefore, they were still confined to their apartments.  

They still - to this day - will not allow any visitors on site.  

The last week of July, my Dad fell in their apartment and hit his head on the dresser.  They called an ambulance and transported him to the hospital.  After about a week or so, he was diagnosed with Lewy Body Dementia.  My Mom told us that the recent weeks prior to his fall were proving more difficult for them both and his health was deteriorating.  Of course, she was dealing with this ALL ALONE. During the first week of August, he went on hospice and he was able to go back home with my Mom to take care of him.  

Because he was on hospice, they allowed us to visit him - one visitor for two hours per nursing shift.  He had runs of good days and sporatic bad days.  Overall, he was doing way better than anyone expected.  But my Mom had almost no support from her family.  We could bring meals and pick up medicines, but spending any quality time with them was very difficult.  It was hard on her to take him anywhere.  And even harder for her to leave him.  

We knew his health was failing and he likely didn't have much longer.  I wanted Murphy to be able to see him - well, I wanted all my kids to see him, but that wasn't really possible.  With allowing only one visitor - it isn't possible to take a child.  My younger brother, Cabell, has a six-year old son and one night he took him.  They told Cabell he couldn't take him to see his grandfather.  Cabell, knowing another opportunity wasn't likely to come, told her he was taking him up or she could call the police.  She didn't call the police.  And little Chase got to see big Chase.  It is crazy to me that children have to go to these lengths to see their dying parents.  

Also, you should know that NO ONE is out of their apartments.  All doors are kept closed.  We see the person at the front desk who screens us and then NO ONE else.  It seems that there is actually very little risk of Covid - and a huge cost in mental health, which quickly turns into physical health for the residents. 

A few days later I planned on taking Murphy to see him.  Since Murphy is 16, I was going to let him go up to visit them and I would wait in the car.  When I called my Mom to ask what she wanted for dinner, I could hear my Dad say he wanted a cheeseburger with onions - and fries - from Five Guys.  His voice sounded so strong!  He was having a good day!  So, after some conversations back and forth (we were trying to find a place she could take Dad to so all my kids could see him) she said she could bring him to our house.  I can't remember the last time they were at our house!  

So, on Wednesday, the 23rd, I left work and stopped at Five Guys to pick up dinner.  Dad brought his own spray bottle with malt vinegar to spray on his fries.  We got such a kick out of that.  We had a great time and all of us got to spend time with them at the same time!  Spending time TOGETHER as a FAMILY is a way different experience than spending it one on one.  It was so great having them over again!

On Friday night, the 25th, around 5:30pm, my older brother Bruce called me, Sandy (my sister) and Cabell.  He said that Dad went to take a nap at about 1pm and they couldn't wake him up.  His breathing was shallow and erratic.  We all went to their apartment.  Staff said only three of us could visit at a time.  Since Bruce was already up there, that meant only two of us could go up.  

Dad was in his final hours and was out of the apartment, surrounded by my family just two days prior.  What difference does three or four people make?  They screen you, make you put on a new mask, give you a gown (???) and then you see absolutely not a soul until you get into their apartment.  

There was some discussion and finally she must have called the right person who, thankfully had a heart, and let all of us go up.  I was last and I think she must have been flustered because she didn't give me a gown.  So, I walked up to their apartment, didn't pass anyone and went in.  Their apartment is not large, and the only seat left was on the couch, next to Dad.  I sat down and talked to him, but there was no response.  There was no waking him up.  Immediately, I felt so much regret for not saying those things when he was still with us.  

After just a few minutes, Mom's phone rang.  It was the receptionist downstairs.  She told her that she had forgotten to give me a gown, so I had to come BACK down and get one.  

Just to recap - my Dad was dying, and she wanted me to leave to go walk the hallways without a gown, again, to get a gown.  If it was about safety, she should have brought it to me.  Heck, she should have done that anyway considering what if Dad took his last breath while I was gone?  Wouldn't it have been kinder to bring it to me? I thought, well, she probably can't leave the front desk.  So, I went down and she was putting her purse on her shoulder and turning off the lights - leaving!!!  So, she totally could've brought me the stupid gown.  

We stayed for most of the night.  It was really nice, being together, just the six of us.  Life doesn't normally allow that situation.  I think the last time it was just the six of us was when we got my parents a limo for their 50th wedding anniversary four years ago.  The six of us rode in the limo together.  

Anyway, we laughed, we cried and we drank some beers.  

I think I left close to 10pm.  We hated to leave Mom alone for the night.  But Bruce had company and we had company (Tom's family came to visit for Harlie and Cooper's birthdays).  And that night was Harlie's 14th birthday, Cooper's 12th was the next day.  Mom said she would be okay, and she would call us if anything happened. 

That night I bet none of us slept very well.  I just knew the phone was going to ring. Bruce said he was going to go over there in the morning and Sandy and I said we would go in the afternoon.  A little after 1pm Sandy called me and told me to come right then.  I rushed over and expected to get some pushback by the staff.  I didn't.  He asked me who I was there to see, I told him and he said sign in, get your gown, etc. and I ran down the empty hallways to their apartment.

Dad passed away while I was on my way.  But, my Mom, Sandy and Bruce were with him.  They called hospice and we sat together, the same as we did the night before.  I took my same seat, next to Dad.  After some time, Dad's cell phone rang.  He loved the Bee Gees and his ring tone was.... Staying Alive.  

We all looked at each other and then laughed and cried at the same time.  

The hospice nurse said other people could come.  So, Tom came over.  After some time, we all said our final goodbyes and they took him away.  

We had Dad's service on the Wednesday after he passed.  I think it went really well.  Dad received military Honors and they presented my Mom with a flag.  Nancy (Bruce's wife) started us off with a reading.  Then each of us kids spoke.  Two of his granddaughters spoke (Jordan and Maggie).  And Tom surprised me by going up front and speaking as well.    

After the service, we went to Bruce and Nancy's house.  Maggie put together a slideshow of so many great photos of Dad and all his favorite music.    

Now that he's gone, there's no hospice visitation - so we went back to NO VISITORS at my Mom's apartment.  Which means my Mom is grieving the loss of her husband, her friend for the past 54+ years - ALONE.  What the actual hell?  How is this okay?! 

By Friday of that week, we knew we had to move my Mom out of that place.  This no visitation thing is NOT going to work.  So, we found a place for her and are moving her before the end of October.  

Her current residence has had them on lockdown since March with no contact, no activities, and no visitors.  This has resulted in one case - and it was a staff member.  

This new place has followed our state's phases.  They have had activities with small groups.  They are allowed to gather in the sitting areas and they have happy hours.  And, they allow three visitors at a time.  They care about the resident's mental health in addition to their physical health.  This has resulted in one case - also a staff member.  

Two very different approaches, same end result.  Life is about balance.  Tom and I know this all too well.  We have been living it for 14 years.  And I am so appreciative of a place/company that knows how important this is and works really hard to think about their mental health AND their physical health.  I am happy to see that with hard work and common sense, it CAN be done.  

I know it won't be easy for my Mom once she moves.  But, we are all really happy that we will be able to visit her again.  It feels so crazy to think that we haven't been allowed to visit our parents for seven months.  We are ready for that to change.  

Dad's Obituary

 

Mid 1970's

Sandy & Rick's wedding, 1991

My Wedding, 2002

We Heart Harlie and Friends Gala 2019

Richmond Marathon 2010

50th Anniversary party 2016

At Jordan's wedding - August 2019

Lake Anna around 2015?

 

Even though we knew this was coming, it is still hard to believe he is really gone.  Any anger I ever felt towards my Dad evaporated in an instant that Friday night.  I was left feeling so much regret for not doing more and saying more.  The past 14 years have been so busy for me and my focus has been on Harlie and my family, of course.  Now that Dad is gone, I've been thinking about my life as a kid - and him as a Dad.  I've been remembering things I didn't have the time to think about before.  

Even though he was 92, lived a good life and died in such a peaceful way (how could you ask for more?), it is still HARD. I have been surprised at how hard it has been. And there's no fast-forwarding grief.  

Dad had a great life with us.  It is so weird to have him not be with us.  Miss and love you, Dad!

As always, thank you for reading.  

Much Love,

Christy xo

Hardware Removal Day

I'll talk about pre-op day first, then I'll blog about today...

Yesterday we did the whole drive through testing thing.  That was really easy.  And I saw no reason why it couldn't be handled without the car, but whatever.  We let Harlie stay in her pjs since we had to be there pretty early, and she didn't have to get out of the car.  This should show how close I am to losing it, because I am NOT a wearing-pjs-as-clothes kind of person.  I firmly believe they should stay in the home.  Pajama day at school is a difficult day for me.  

Anyway, the whole thing from driving into the garage, parking in the 3rd spot (only one other car was there), having them swab the back of her throat for 10 seconds (which felt WAY longer) and exiting the garage - took 6 minutes.  I didn't take any pictures because I didn't want to get in trouble (this big city, pandemic environment has put us on edge for sure).  

So, since we were out and we had nothing else to do but go back to a one bedroom teeny tiny apartment, Tom drove us to some beachy area in South Boston.  We got out and walked this trail around some waterway.  Clearly, I live my life on a need to know basis - and I didn't need those details.  

It was a little chilly, so we just took one big loop around (I'm guessing it was over a mile loop - it was around that water you see in the picture) and headed back to the car.  These little things we do when we are here (like taking Harlie to the aquarium) keep her mind off the hospital and that is really good for her.  But, now there is literally NOTHING for us to do with her.  I feel so bad for her - she's done nothing wrong, but her already difficult life is now so, so much harder.

Tom stopped and got me a fancy coffee on our back to the apartment.  Then we just hung out there until our 1:30 pre-op appointment.  They called me before that to let me know that her test came back negative - so that was good.  Not that I was surprised, of course. They test all admits and I think they have less than 10 Covid patients and only one in an ICU.  So, that's good.  I would think that in most, if the kids test negative, than the parents probably are, too.  Especially in vulnerable kids.  So, I don't feel as fearful being in the hospital as I thought I would.

The pre-op appointment was "fine."  Although, if I'm being brutally honest, I am officially tired of answering the same questions over and over and over again.  I have had each person "update" her med list, just to learn in her room that they had Lasix listed PRN (as needed) instead of twice per day.  WTF.

We saw a nurse practitioner and had to answer her name, her DOB, her allergies, what procedure she's having, her meds, does she have any issues with anesthesia, any liver issues, has she fallen in the last few weeks, diabetes, my address, my phone number, who lives in the house with her, do we smoke (no), etc.  Then, we see an anesthesiologist and I have to answer all those same questions again.  It probably didn't help that I had to reorder her Sildenafil that morning, which takes about 12-15 minutes of me answering all the same questions I have had to answer every month for 15 months now.

Anyway, when done, she asked to go to the gift shop, which is obviously part of our routine.

Target is open, though.  But, way too many people to expose her to there, so no way.  And no one gets tested before going into Target.  But, this gift shop in a children's hospital, which could limit entrance to one person at a time, can't be open.  Got it.

So, we just went back to the apartment and that was that.

We woke up early this morning because we had to be at the hospital at 6am.  Harlie was up and ready for the day without us having to wake her up.  She was definitely more excited than scared, which is good.

We goofed around, talked to all her docs, etc. Dr. Resnick (her surgeon) showed me a selfie on his phone of him wearing his We Heart Harlie shirt.  And last time we were here, Dr. Vinson (her anesthesiologist showed me a selfie with hers!)

Then they came to take her back...

We went and got checked into the waiting room.  They are now assigning seats or areas for families.  We were in #22.

Honestly, this was a welcome change.  At first, I didn't like it.  It was just more change to remind us how awful things are.  But, after the ENT came in to talk to us, I was glad the "walls" were there.

I'll try to explain.

Harlie's problem since birth has been not enough jaw for her tongue base to lay down in her mouth.  This causes her tongue base to be in her throat, blocking her airway.

We worked for years to try and make her jaw bigger.  We always felt so lucky that she had no actual airway issues - meaning her airway itself was FINE, it was just blocked at the top.  So, we were able to focus on fixing that particular problem.  Several really hard surgeries and many years later, we finally did it.  And in August of 2015 she was decannulated (the trach was removed).  And life was so good.  For two years.

Then her jaw developed a side effect - and the bone fused to the base of her skull, locking her jaw into one place, preventing her from opening and closing her mouth.  The surgery to fix that (in August of 2017), made her jaw too small again, and created the same upper airway obstruction she had.  That is why she had to be emergently trached again.

Unfortunately, the first few months of trached life proved very difficult.  And in February of 2018, her ENT in DC discovered that the emergency trach was placed through her cricoid cartilage, instead of her trachea.  This was an airway problem.  And he had to do an LTR (laryngotracheal reconstruction).  He took cartilage from her ear, and tried to repair the damage.

If you've been following Harlie, you'll likely remember how difficult that two month hospitalization was on her.  She almost died. It was horrible.  And I definitely walked away with PTSD.

So, we went back to the drawing board and started working on fixing the upper airway obstruction.  Hence, this jaw distraction done in March.  This is actually step one of a two step process.  Step two is when they design custom jaw joints for her and then put them in?  Install them?  I don't really know the proper language there.  This first part gives her a downward/forward rotation and the second part will give her forward movement/forward length.

So, we didn't really expect for her to come out totally fixed, but we did expect to be much closer that that ultimate goal.  We hoped for an improvement, though, maybe in her speech, or her ability to wear a speaking valve or even a cap some (which allows you to breathe in/out of your mouth and nose only).

So, her ENT went in first and did a scope.  He said he saw two problems.

Problem #1:  This is a picture of her epiglottis.

The picture on the left was taken while she was sleeping, in a relaxed position.  No intervention, just a scope and a picture.  Her epiglottis is completely squished by her tongue base in this picture. The tongue base is to the bottom/left of the photo, the epiglottis is in the middle and the back of her throat is to the upper/right of the photo.

The picture on the right was taken after they moved her jaw up, in a forward position.  In this picture, you can actually see her epiglottis.

It should look like the one on the right ALL the time.

So, this isn't good.  This is an upper airway obstruction.  And this is what we've been trying to fix.

Problem #2:  Her airway.

These pictures are of her airway above the trach.  This is after he moved her jaw forward, and went through her epiglottis (I think is what he said).

Both pictures are the same picture of her airway.  

The picture on the left is pointing to her airway, it measures 2mm.    

The picture on the right is indicating all the scar tissue that should not be there at all.  All of that circled area should be open airway.  He said it should be closer to 8mm.  

He said she would need to have another LTR and maybe a rib graft should be used, since it is beefier.  

This is the really devastating part of it all.  

I could barely hold my tears back till he left.  And then I was glad for those walls.  

I don't like to cry.  I especially don't like to cry in public, as I might have mentioned.  

But, to have the hopes that we did, just to find out about this scar tissue, I just can't explain it.  

Clearly our first thoughts were that there was no way we could ever agree to another LTR.  We almost lost her and I cannot even think about doing that to her again.  In thinking that, we had so many bad memories come flooding back.  All of that was so unexpected, and we weren't prepared to have to think about all that again.  

Then, my next thought was do we have to start thinking about accepting that we will never fix her airway?  That she will live with her trach forever?  Do we have to give up?  Giving up feels so wrong, but making her go through more and more feels wrong, too.  

It all feels so tragic and so unfair.  The start of all this wasn't a surgery gone wrong - it was a horrible accident - that left her with disabilities we are still trying to fix.  

Then Tom said we have to focus on the now.  Today her metal will be gone and she will be happy.  And we have to focus on that for now, be grateful for that and deal with the rest later. 

I had to pull myself together, since we still had to talk to her surgeon and her anesthesiologist and I didn't want to be crying then.  

I did think that when things calm down (and we are not in the middle of a pandemic, hoping and praying life will get better one day) we will need to see Dr. Preciado, her ENT in DC, since he knows her airway so well.  Maybe (oh, that hope is so sneaky and stubborn) he would say something different. 

After a couple of hours Dr. Resnick came by and said everything from his standpoint, went well.  She lost a lot of blood.  But, all the metal came out okay and he thinks we got a lot of downward/forward growth.  We still need to think about step two.  But, there is no way we can think about that now, for several reasons.  

He said we could take a break.  But the custom joints take about four months to build, so we just have to keep that in mind as we think about timing.  

Hard to justify doing more to the upper airway if we can do nothing about the scar tissue in her airway.  But, not doing step two makes me feel like we just did step one for nothing.  So, as soon as we can/want to deal with it, we will have to see Dr. Preciado.  

In the meantime, we need to just let her be.  We need to let her heal and be as happy as she can be.  And we need to stay out of the hospital and give us all a much needed break.  

I know I mentioned it earlier, life with a medically fragile child was hard before coronavirus.  It feels impossible now.  And that is so true.  We've been doing this for 13+ years and we are out of gas.  Doing all of this during this pandemic might have broken me.  

The cafeteria is open, but there is no dining area.  No where to sit and eat.  No where for tired, stressed parents to get any kind of much needed break so we can return to our child's room a little more rejuvenated.  Everyone is wearing a mask and there are signs everywhere - so many signs telling you what you can and can't do.  There is so much fear.  And it has created an atmosphere where we are on edge all of the time.  

I cannot put into words how beat up we feel right now.  We are done.  We just want to be home.  

The next direct flight isn't until Friday.  So, if they let us take her out of here before then, we might just drive home.  I don't know.  We'll have to see how she does.  

She's now in the cardiac ICU and resting.  She did lose a lot of blood, so they gave her a blood transfusion.  She woke up for about a minute and she started to cry.  She said she hurt.  So, her nurse gave her some pain meds.  I snapped a quick picture during a re-positioning in bed.  

She looked so alert and good.  And when she tried to talk it was so different since she could move her jaw again!  It was still hard to understand her because everything is so swollen.  But, I have high hopes (ugh) that her speech could be improved.  

So, we are doing okay.  I feel like sometimes I'm not as honest with you about how difficult things are because I'm afraid I will sound like I'm being whiny or complaining.  And maybe I'm trying to trick myself into thinking things aren't as bad.  

But, not today.  Life is super hard right now.  And life is super scary.  And Covid-19 isn't what I'm most afraid of.  Although it is NOT helping.  

We are hoping for a restful night for her and better days ahead.  That's it for tonight.  Tom and I will leave soon to go get some food and take it back to the apartment to eat.  And we are definitely having some wine and beer.  

Thank you - as always - for reading, for caring and loving our girl.  

Much love,

Christy xo

Back in Boston

Hi all!  I know it has been another long time since my last post.  For the past two months being so "slow" it has actually been quite busy for us.  I've wanted to write so many times, but there's just too much in my head.

Harlie's original hardware removal date was May 12th.  They put the metal in March 6th.  Of course they shut down surgeries since then, so our date has been unknown.  We did know that the 12th was cancelled, but didn't get the new date until last Monday, a week prior to the surgery.  And that was after much discussion with her surgeon (more about that in a minute). 

Honestly, that worked out okay because we didn't think about the original date very well. May 11th was Murphy's 16th birthday.  So, if they still did surgery on the 12th, we would've missed his birthday.  That would've been terrible. And there are limited flights now.  There used to be several flights to/from Boston per day - now there are only a few per week.  So, we would've had to fly to Boston on Mother's Day.  So, all in all, waiting one week worked out better.

I have had some conflicting feelings about this surgery - a mix of excitement and fear.

I am so excited for her that she will be free from this metal.  While it doesn't look that bad from afar, the individual pin sites are still painful for her.  We started with having to clean her pin sites twice a day.  After a while, we were able to go down to one cleaning per day.  Lately, some days we have to clean twice a day again.  It is like her body is trying to get rid of the metal.  So, soft tissue is growing out of some of the pin sites and cleaning it, or touching it causes them to bleed more.

I was terrified of having to bring her out of her protective bubble and put her on a plane and take her to a busy city and into the hospital.  Her surgeon and I discussed this at length during a video conference a few weeks ago.  He said we do not want her to get this virus - and that is so true.  But, this metal cannot stay in forever.  And that is true, too.

We have a known risk with the metal - we are lucky she hasn't had an infection yet.  We have an unknown risk of her getting this virus (or any virus for that matter).  I don't see how we can make the unknown risk more important than the known risk.  After speaking with nurse friends in the field, that has proved deadly for some (people not seeking medical attention out of fear of being exposed to the virus).  And maybe it is better to travel while people are still not traveling as much versus waiting for things to pick back up.  And what would we be waiting for?  And for how long?  Because that metal doesn't care about what is happening in the world.  Her surgeon agreed, so he put her at the top of the list for surgery once they opened back up. 

At first I was thinking we are risking her life going.  We are also risking her life not going.  But, honestly, we cannot live like that.  That isn't living at all.  I cannot live so fearful.  I suppose that is because we have been doing this for 13+ years - not two months like most people.  We have to trudge forward, whether we like it or not.  Normally, I would say "and make the best of it" but that feels like too lofty of a goal right now.

Luckily, Tom was able to get the same Air B&B we stayed in last time, so we knew what to expect.  This sounds like nothing, but when you are already stressed about every little thing, this is a welcome comfort.  And he was able to talk to the owners and they said that the place has not been rented in a few weeks, so that is great, too.

Earlier this week, I received a call from a nurse from Boston Children's Hospital.  She gave me all the details of our pre-op appointments on Monday.  Harlie will be tested for the coronavirus Monday morning at 8am.  She told me they are doing drive through testing and she continued to give me details like, "the patient needs to be sitting behind the driver" and "you will see all the nurses in full PPE, they are changing between patients."  Okay, but, we won't have a car.

Silence.

Me:  So, I guess we can just walk up and walk through?

Her:  Um, no.  We've actually turned away patients who didn't come in cars.  Some patients take a taxi.

Me: Insert blinking here. Processing information...

If the nurses are wearing full PPE, how is being in a car with the windows down any safer (and for who)?  We are just wearing masks - they have full PPE on.  Does the virus know you are in a car vs. just standing there?  Does something change in the air between a car window that doesn't happen when there is no car?  And you think getting into a TAXI with a STRANGER that OTHER strangers have sat in is safer than me walking my child with heart AND lung disease (who cannot wear a mask, by the way) into the garage?

I get safety and am all for it - trust me.  I am the mom that took my kid out of school in her 2nd grade to keep her safer.  I've been washing my hands diligently (without being told) for YEARS.  I've been avoiding places where kids gather for years.  But, seriously, I don't get this rule.  One size doesn't fit all.  Have a medically fragile child and you'll get that fact.  I'm going to have to come back to that later.

Anyway, she agreed with me that this was pretty crazy, and really made no sense.  She offered to fight it for us.  But, I have to pick my battles.  And, this isn't one I wanted to fight.  I told her the easiest solution was for us to rent a car.  I wasn't super comfortable with taking an Uber from the airport to the Air B&B anyway.  So, this just pushed me over the edge.

My problem is that we don't have gobs of money to throw around.  Times are hard right now and kitchen renovation projects aren't selling like they used to.  And when your one income in the house is very much adversely affected by a tanking economy, we have to be a lot more frugal.  You'd think traveling right now would be cheaper - but our one-way tickets to Boston were the most we've ever had to spend - $263 per ticket (not counting luggage fees).  Plus, parking isn't provided at the Air B&B, so we really didn't want the extra headache of having to worry about a car the whole time.  Especially when the walk is easy and good for us.

Anyway, we will make this work.  I did ask her if there was anything we could do about the 8am arrival time for testing.  Her actual pre-op is scheduled for 1:30 IN the hospital.  And an 8am time is a hard time to have her up and ready and already there.  But she said it takes four hours to get the results of the test and they have to have them back before her 1:30 appointment.  Huh, I didn't know they had four hour tests.  So, I said, got it, 8am it is.

I was thankful for her kindness and reasonableness - I never felt like she didn't understand.  In fact, I feel like she was so empathetic that we had to travel with her.  It was a conversation - not an argument - how refreshing!  I told her I would rather save my battles for more important things.  She gave me her number and told me to call her.  Haha!

Moving on...

Our flight was at 10:30 this morning.

Not a lot of people around.  Such a difference from the way it used to be.  But, of course I'm not telling you anything you don't know.  The airport was depressing.  Getting the rental car was depressing and frustrating.  Tom got a message to go to the fast pick up in the garage.  But then there were signs that said that was closed, so we went back to the counter.  And despite the airport being a ghost town and being the 2nd in line (when we rented a car from here to get the boys from summer camp, we have waited for an hour or more!) it still took forever.  Everyone is miserable.  Whether they are pissed they have to work, pissed they have to travel or just pissed because life is so hard right now - it has created an unfriendly environment.  It really is a sad thing.

In Richmond, only one security area is open, so you go through there and then if your gate is at the other end (as it was in our case) you get escorted by staff through the exit to your gate. 

The plane was definitely not full.

Tom took Harlie duty on the flight.  She is so sweet, but man is she high maintenance on a flight.  So needy with all that oxygen monitoring and stuff. 

On the shuttle bus to the rental car area. 

I promise you, we thought through every extra exposure.  Do we drive or fly?  Driving means a 10-hour trip and having to stop for food, gas and bathroom breaks in busy gas stations.  Do you Uber or take a rental car?  But, taking a rental car means having to take the shuttle.  Ugh.  Thinking through these decisions like a life is at stake is exhausting.

Places that are normally bustling with people...

Harlie taking a selfie with us.

She's happy.  And she's oblivious to what is going on in the world, and we are thankful for that. All this girl is thinking right now is that her life will be better without that metal.  Tom asked her the other day if she was scared or worried about her surgery.  She said, "No, it will be just a little bit of blood."  This sweet girl is tough as nails.

As always, thanks for reading, thanks for caring and thanks for all the unwavering support.  We appreciate it more than you know. 

Much love,
Christy xo

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