Post-Op Day 3

It occurred to me that when I post this blog to Facebook, it shows the first pic really big. So, sorry about that! So, I added a much better pic, so that people scrolling aren't startled by a huge pic of Harlie's swollen face. 

Okay, on to our reality...

Day 3. Peak Swelling Day.  

Dear God, I hope so.  

Last night when we left, I was feeling soooo yucky.  The good thing is that I really liked her night nurse.  She seemed like she was tough, but compassionate. And she was a problem solver.  I like that in a person.  

We left close to 9pm.  It was hard to leave her.  And as we were walking to go find some dinner, I told Tom, "This is it.  I am never asking her to go through this again." And he said, "You say that every time."  

I can't help but think that fundamentally, humans are way stronger than we give ourselves credit for.  We need to try and remember that.  Somehow, when we are challenged, we dig deep and survive.  As we walk through the streets of busy Boston, I do not see strong humans.  I see people who are afraid of everything.  I wish I could tell them that they are stronger than they know.  But, if you believe you are weak and afraid, then you will be weak and afraid.  

We are not weak or afraid.  And somehow, despite how incredibly HARD this is, we will get through it.  And, I suppose, in time, when we are faced with new information and new possible solutions, I will weigh them in the grand scheme of things and make a decision based on that information - not on my memory of this surgery/recovery or on the emotions I'm feeling right now.  It is what I have been doing for 14 years.  

But, right now, I am saying, I am never asking her to go through this again. 

Also, last night, I was able to peek in her mouth.  That front, bottom, permanent tooth is gone.  GONE!  Where did it go?  We know she didn't swallow it.  When did it come out?  I think it came out on surgery day.  I just can't explain how I'm feeling right now.  Why oh why did I make the decision to remove that damn splint?  WHY?!  March 18th.  Less than one month ago.  After all that effort, and she freaking lost another permanent tooth anyway.  After all this poor kiddo has to go through - it is just salt in the wound.  I HATE to say things like - it's unfair, or can't she catch a break?  It is hard to have a good attitude and laugh when you hear yourself saying those sorts of things.  But, fuck, it is so unfair! Sometimes, I think God has a voodoo doll of her.  I want him to pull all the pins out, hug her, say he's sorry, and then put her down and leave her alone. 

Yikes.  That might be harsh. Sorry.  But I can't help what I think when I'm pushed like this.  It's killing me, people.  Killing me!

Okay, changing subjects to talk about something good...

A while ago, I reached out to my family asking for help with the boys and dogs while we are gone.  Jordan (my niece) was quick to create a spreadsheet and sent it out to everyone so they could sign up for different shifts to cover.  How great is that? It is bringing a smile to my face right now.  

Murphy got a job right before we left.  His first day was Saturday (we left on Sunday) and he said he really liked it.  He is running food at our favorite restaurant.  And he is trying new foods while he's there, which we are LOVING. He tried sushi!  For those of you that know us well, you know how much we love good food.  And somehow we have produced three kids who do not appreciate good food.  Well, one doesn't even eat any.  Haha.  Anyway, the thought that Murphy is growing into a person who might appreciate good food is making us so happy.  Plus, this place is generally pretty busy, so if he can move faster and work harder, that would make us really happy, too.  Oh, and they seem to be keeping him busy with plenty of hours.  So, he's going to have to figure out how to manage that with his schoolwork.  Also, good skills to develop.  

Cooper tried out for track at his middle school.  Of course track try outs were this week, while we are gone.  Maggie (his cousin) had that shift on Tuesday (I think, the days are running together at this point) and she went up to the school to cheer him on.  How great is that?!  We were crossing our fingers that he made it.  

He has really been struggling with virtual school.  It did NOT work for him.  And he went from an A/B student who LOVED school, to literally failing every single class.  And for all the people who think it is from a lack of parenting - I am here to tell you that is NOT true.  Anyway, we sent them back to school the second we could.  Just the other day Cooper said, "Tomorrow's going to be a good day, all of my teachers will be there!"  Not all of the teachers have returned, so some of the classes are still virtual, even though he is in school.  Anyway, the school said that only in person learners could try out for school sports.  So, I told Cooper, this is your year, bud!!!  Haha!  

He called me yesterday afternoon to tell me that he made it!  I said, "Congratulations! I'm so proud of you!"  Then he said, "Mom, everyone made it."  Haha!  Cooper's keeping it real.  

Speaking of keeping it real, I have to tell you this... Cooper had like a 3% F in Social Studies at some point earlier in the 3rd quarter.  Social Studies was one of his favorite subjects last year, and he was put in an advanced class.  But he literally had a 3% F.  He has been doing Adrenaline with our friend Paul for the past few months.  He really likes it.  That lead to him thinking about trying out for track.  The school posted that the students have to have a passing grade in all core subjects in order to participate in school sports.  Finally, some positive motivation!  

So, after a few weeks or so, I was sitting at work and I got an email from Cooper.  The subject was "I DID IT" and he sent a picture of his grades.  He brought his Social Studies grade up to a 66.3 D.  Haha!  Well, the fact that he cared at all is a total win.  Thank you to my dear friend, Bethany, for working with him so much to help him bring his grade up!  And thank you, Paul, for helping his mental and physical being with Adrenaline!  I'm so grateful for our friends who are always willing to get in the trenches with us!  

Speaking of our friends, we had several people offer to drive from Virginia to Boston to come get us!  For real!  You people are crazy!  Haha!  Love you all, so much! We will let you know if/when we hit a dead end and need that.  

Well, we just did all of Harlie's wound and trach care and she was NOT happy.  This morning, plastics came and pulled that drain line in her neck.  Luckily, we were not here for that. I feel bad saying that.  The truth isn't always pretty, that's for sure.

Oh, interestingly, one of the docs on the plastics team that we met right before they took her into the OR said he looked in her chart and saw that Dr. Magee was one of her surgeons from way back.  He said he knows Dr. Magee and he asked us how we ended up with him.  Dr. Magee and his wife started Operation Smile and when we lived in Norfolk, VA, I worked there.  So, after I had Harlie, I called him and he did two of Harlie's first jaw surgeries.  She had a cardiac code in the OR there, and that hospital (Children's Hospital of the King's Daughters) didn't have a cardiac program.  So, I couldn't take Harlie back there.  That is why we chose Boston, we knew we wouldn't have to worry about cardiac support.

Well, today that same doctor came to chat with us.  He said he was reading Harlie's history and he had a question.  He told us that he went to her surgeon and said, "So, I was reading Harlie's chart." And then her surgeon said, "I hope you had a drink."  Haha!  Man, I love a good sense of humor! Yes, her chart/history is crazy.  Anyway, he asked him if he knew if we had ever seen genetics.  Her surgeon said, we probably had.  But, we told him no, not really.  We did very early on (soon after Harlie was born), but there wasn't much to be said.  

Well, this doc is interested.  He asked if we would want to find out/learn more about why/how she is the way she is.  I told him if it were easy, yes, but if it would take effort on my part, then, no.  He said he would make it easy and he would handle the research/study for us.  Research away, buddy!  So, he returned with consent forms and tomorrow he will come back to take our blood.  So, we'll see what comes out of that.   

Here are some pics of our day so far...

It was raining too hard to walk.  So, we got a taxi.  We tried Uber, but there are very few Ubers now and there were NONE this morning.  Luckily, there was a taxi sitting out front of the hotel, so we jumped in.  On the way to the hospital the rain turned to snow.  

  

The view from Harlie's room.

Tom took the arms off Harlie's wheelchair so I can sit in it.  

Harlie suctioning her mouth.

At this point, I don't think she can see much at all.  And she can't hear.  And she can't talk.  Ugh, killing me, people!!!

Harlie knows the buttons by touch.

They brought her a bunch of ice packs, and we put them on her face.  She didn't even protest. 🙁

Plastics came by and brought her these eye ice packs.

This is when we were getting her all cleaned up, doing wound care, trach care and changing dressings. And we keep telling her we love her and that we are so very sorry. 

When Plastics came by they said this is a lot of swelling.  Sounded like it was a little more than they were expecting.  They have her on something for swelling, and we added some Lasix and a steroid to see if any of that helps.  

Her inner ear is still bleeding.  And now they can't see her ear drum anymore.  I swear, if something bad happens to her hearing (worse from the way it already was) from this, I'm going to lose it.  

We've received some gifts while we've been here - baskets, bags and dinners.  So, thank you all so much for the love.  We are so very thankful for each and every one of you! 

Well, that's it for today.  

Much love,

Christy xo