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