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