Post-Op Day 4

Hi All,

Harlie's swelling looks like it is marginally better today (compared to yesterday).  I'll add a pic in a bit.  I've learned that the first pic I add to my blog is the one that gets highlighted when I share the blog post on Facebook.  So, I'm sorry for all of those with weaker stomachs who hate me now.  They should just be thankful their kid isn't going through this.  Because we cannot wince or show any issue with looking at her.  Poker face.  All day, people. 

It is hard to believe how swollen she is, despite all the meds they are giving her to help with that.  God knows what she would look like if they didn't give them to her! 

She has attempted to look at her tablet several times over the past couple of days, but I guess she realized she couldn't see it/hear it.  So, she shut it.  Today, however, she was able to watch a show or two.  So, that's a little progress.  

Plastics always comes super early and her nurse told us that when they came to look at her incisions and drain site, Harlie signed "stop" and swatted them away.  You don't have to know sign to understand what she's saying.  Her gusto and attitude gets her point across.  

If the nurse shows Harlie the blood pressure cuff, Harlie willingly lifts her arm.  But, if you're coming for her IV or near her face, she is not as cooperative.  Tom and I have been watching Shameless and one of the characters wears a sleep mask that I think Harlie should have.  

I think it would be hilarious, but I wouldn't want to offend anyone.  So far, most of her doctors and nurses have had really good senses of humor.  So, I'm thinking it would've been okay this stay. Oh well, next time.  Haha!

So, this morning we called home to check on the boys.  I was on the phone with Maggie (my niece) and she went and sat on the slack line in our backyard.  While we were talking, she exclaimed, Whoa!  So, I asked her what was wrong.  She told me she fell off the slack line - so I said, "Tom, pull up the camera."  Haha!

Ahhh, I'm so sorry, Maggie, but this is too funny not to share!  I have to say that you didn't miss a beat, I would never have known you fell if you didn't tell me.  Your voice didn't change at all!  I have laughed so hard watching this video!  I cried tears of laughter!  You totally made our day better!  And you're such a great sport!  Love that about you! Thank you, Maggie! 

So, here's how Harlie is looking today, on Day 4.  

She stares at me.  I've asked her several times if she is mad at me and she shakes her head, "no." I then sign and tell her I love her and that I'm sorry and she signs that she loves me.  But, damn, that stare!  I'm not sure I believe that she isn't mad.  And, really, I couldn't blame her! Our poor, sweet girl!  Oh, our hearts are aching!

I have uploaded so many pictures, just to delete them.  I want to share them, because it makes me feel like we are less alone if everyone else has to see what we have to see.  But, then I realize that probably isn't fair to you. The bruising goes from the top of her chest (collar bone area) to behind her ears and into her hairline.  We keep telling her it will all go away.  She doesn't appear to be comforted. 

Harlie watching the backyard camera with Maggie, Cooper and the dogs
talking through the phone.

The team rounded this morning.  The attending cardiologist is her cardiologist here and we just saw him pre-operatively on Monday.  He's one of the few people who knows what she really looks like.  I told Tom yesterday that I wish we thought to print out a picture of Harlie to put on her door.  

Anyway, she is now on all meds through her g-tube.  So, assuming all goes well today through tonight, we are planning to take her home tomorrow.  Tom found a car to rent, so he will go to the airport to get that taken care of tomorrow morning and then head back to the hotel, load up the car, check out, then come to the hospital to pick us up.  When we told Harlie we were going to go home tomorrow she pointed to her face.  So, Tom told her we are going to drive instead of flying home.  

Her nurse told me that when she took her to the bathroom, Harlie wouldn't go to the sink to wash her hands because she didn't want to see herself in the mirror.  I knew that, but it is kinda crazy that Harlie is able to get that feeling across to other people, too. 

Normally, I feel pretty good about taking her home, but this time, it feels weird.  She is telling us she isn't ready to go home.  We think she doesn't want anyone to see her.  We've asked her if she wants to go for a walk on the floor, or out to the garden, but she says no.  I know each day will get better, but it is still hard to constantly make her do stuff she doesn't want to do. I am fine taking her home.  I am just worried that all the moving around is going to hurt her.  The bumps in and out of doors in her wheelchair, for example.  I wouldn't even consider walking her down the street with all the uneven pavement!  Doesn't that just sound painful when you're head is aching?!  And oh, the looks we are going to get!  

We were able to convince Harlie to let us give her a shower today.  It was tricky because they don't want us to get water on her IVs (one in each arm) or in her ear.  I think I did a pretty good job, considering.  After her shower we did her wound care, I changed her trach ties, put her hair up in two little buns and I think she felt so much better.  She wanted to sit in the chair instead of getting back into bed. That's great!   

She asked for Legos, so Tom went to a local toy store and got her some.  She wanted to do it, but she got so tired and had to stop.  Man, it is hard thing to see a kid not have the energy to play. 

Side story, usually I don't remember my dreams. And I can't believe I'm going to share this with you, but I think it is so funny.  I am in a Fantasy Football league with some family and friends. And we have done it for the last five years or so. Last night in my dream, it was like 3 weeks into football season.  I made a comment to a family member that is in the league that I was sad we didn't start our league this year, and I was missing it.  They looked at me like, oh crap.  And I realized that they started the league without me!  I asked a friend if she was in it and she said, "Of course!"  So, I started to cry and walked away.  Hahaha!  I woke up and thought, what month is it?  Oh, April!  Whew!  Just a dream.  Haha!  I have giggled every time I thought about it. Silly.

Well, I'm going to wrap this one up now.  There have been lots of interruptions, so my thoughts are all over the place here.  Thank you for all the love!

Much love,

Christy xo

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

Post-Op Day 2, TMJ Reconstruction

Hi!

Well, we got moved to the cardiac floor last night.  Usually, my take on being on the floor is that we are better off at home.  But, being so far away makes that impossible, well and the drain line, too.  There is NO way she is ready to go home.  Hopefully things have progressed in her health that her lungs seem to not take as much of a hit post operatively as they have in the past.  It has always been her lungs that have prolonged her ICU stays, so by the time she was ready to leave an ICU, she was essentially ready to go home and have one on one care by us and/or home nursing vs. one to three or four or whatever ratio that particular floor has (depending on which hospital we are in at the time and how busy they are).  

Anyway, the new room is super small (but private, so that's good).  When Harlie got over here, she was really complaining of pain.  Turns out she had not gotten Dilaudid in like 8 hours!  So much for pain control.  So, I told the night nurse (who was awesome) to please put her on a schedule and not to count on Harlie to tell them when she hurts.  It is really frustrating to have to constantly repeat yourself. Harlie already has a high tolerance for pain/discomfort and if you wait till she's crying, then you pushed her too far.  So, they took care of that and she seemed to get some sleep over night. 

Here's what she looked like when we got in this morning...

Oh, my sweet girl! I feel SO bad for her!  

Her ear is still bleeding (from inside), so she still cannot wear her hearing aid on that side.  The BAHA can be cumbersome in bed, so she keeps taking it off.  At any rate, I told her nurse that she might have to pull her mask down when she's talking to Harlie so that Harlie can have a chance to hear her or read her lips.  That muffled sound when you talk behind a mask is impossible for her to hear. Oh, I feel so bad for the hearing impaired right now!  

Anyway, the team here said pain management is their priority for her.  So, now she is on a schedule of all kinds of stuff.  Hopefully that will help.  

Her surgeon came by to check on her.  We talked about what needs to happen to get her home.  That drain line has to come out, all of her IV meds have to be changed to oral meds (through her g-tube) and we have to be able to manage her pain on oral meds.  

I haven't even told you about our logistical challenges for this stay...

The last few times we've come up here, we've been able to get the same Air B&B.  It is a mile from the hospital.  And it is super cute and comfy for us. And being able to know what to expect is really nice when you're going through a stressful time.  

Well, we had our virtual pre-op appointment with her surgeon in February to get more details about pre-ops, surgery, post-op, etc.  As soon as we talked with him and got more info about how long we'd be in Boston, we scheduled our Air B&B.  But, it was only available Sunday through Wednesday.  So, we had to find a different place to stay from Thursday on.  We tried to find a different Air B&B for the whole time, but that wasn't as simple as you'd think.  Everything is harder (and less available) with so many people having to change their way of life because of Covid precautions.  So, we got a different place Thursday to Monday.  

Of course, we had to get out of our favorite Air B&B by 11am and we couldn't get into the next one till after noon.  So, we packed up and left our stuff ready to go and came to the hospital early.  Then Tom left to go get our stuff and move it to the the new place.  He called me to say that we didn't read the fine print.  It was terrible and dirty.  And the bathroom was down the hall, shared by who knows how many people. 

Well, I've been there, done that.  After I had Harlie, I had to leave the hospital and go to the Ronald McDonald House and share a bathroom there - postpartum!  Um, never again. Life is too hard right now to deal with that on top of everything else.  So, he left and checked into a hotel.  

He's also trying to figure out how we are going to get home.  There used to be several direct flights per day between Boston/Richmond.  Now there's one flight per day.  Some days there are none!  Some days the flights are only at 6am.  There is no way we can make that work. On Sunday, there is one flight at 5:45pm.  So, maybe, if the stars were to align, she could be discharged that afternoon, and we could do that.  Of course, he can't book the tickets until we know for sure.  And it was a full flight on the way up here, so who knows if we could get on that flight.  

So, we thought maybe driving home would be less stressful. Plus, it is awful having to fly and go through all that airport crap post-op from craniofacial surgery.  People are already afraid of people. Even if you look perfectly healthy, you are treated like you have the plague. Then they see us with our swollen, bruised faced kid... it is just hard. I'd really rather not deal with all of that. 

Anyway, renting a car - not a big deal, right?  Haha, not so fast.  We started looking and even at the airport, most of the carriers said they had NOTHING available.  Nothing.  WTH?  I guess when you select one way rentals, maybe that makes it more difficult?  He found one, but we can't even reserve it because we really don't know when we are leaving.  So, we are just going to have to wait and see and hope that it works out.  After all the trips up here through the years, none have ever been this stressful with logistics. 

So, back to Harlie... she is getting more swollen and bruised by the hour.  I swear to you - the pictures do not do her justice.  I see her face, I wince, I take a picture, I look at it and I'm like, nope.  That's not what she looks like. She looks worse!  

   You can see more blue coming in...

And her mouth, lips and around her chin is more swollen than before.  She could talk a little before, but now, it is almost impossible to understand her.  Her lips can't move at all.  And her airway itself sounds swollen - she has hardly any sound at all.  She is signing to us and I am feeling pretty rusty on my sign language skills.  But, she is good and somehow gets me to understand her.  She asked me (in sign) why her face is so big.  And then asked me how long till it gets smaller.  

She has only peed once today so far (and it is now 6:15pm).  When I made her get up and go earlier, I forgot about the mirror in the bathroom.  Not that I could do anything about it.  But, she looked at herself in the mirror and started to cry.  Oh, she breaks my heart.  

Okay, well that's it for now.  I'm tired.  And I just had a conversation with respiratory therapy about their humidity system for Harlie's trach (it isn't working for her) and I'm feeling frustrated.  I don't have the energy to explain that right now.  What I'm feeling is a lot of frustration over trying to make it easier for Harlie to breathe.  How is it right in the Universe that we should have to fight for that? Over and over.  Fuckin' A.  

Sorry.  I wish I could be more positive right now.  Maybe tomorrow.  

Thank you for the love, the support, and all the kind words.  We appreciate it more than you know. 

Much love,

Christy xo

Post-Op Day 1

Funny that Post-Op Day 1 is also Discharge Day.  I suppose there's a first time for everything.  

We are back at the hotel now.  And while Harlie is smiling in the following photo, she is GRUMPY.  Whew!  The swelling is getting worse.  Tomorrow should be the worst day and then it should start to get better after that.  You think I would have been prepared for that, wouldn't you?  But each time we do this, I'm always shocked.  I guess I block this part out of my memory.    

Health wise, I think she's doing well.  We took the Vest to the hospital and were able to keep her Vest treatments up, which I think helped a lot.  We can't get the incisions wet for 48 hours.  But, her hair had so much blood and goo in it that I had to wash her hair.  So, I gave her a quick bath (without getting the incisions wet) and she protested.  A lot.  I felt so bad because I so wanted to give in to her and not make her take a bath.  But, I couldn't live with her hair the way it was.  She HAS to feel better now.  Right?  

The only thing that makes me a bit nervous is that she has been bleeding a bit since we left the hospital.  I'm thinking it's from the trach collar since she's been moving around a lot more now that she's not in a hospital bed.  

So, since I forgot about the swelling, I forgot that she wouldn't be able to swallow.  Again.  Sometimes, I think we are being tortured.  We get through something so horrible, just to have to go through it all over again.  And again.  Sigh.

Anyway, as far as how the surgery went... it went well.  She said that the new bone that grew looks good.  There's no sign that the infection did any damage.  But, just to be on the safe side, they are leaving her on the antibiotics for one more week.  

So, as far as her jaw goes, we are done for now.  Her surgeon wants to see her next summer.  But, that's it.  Now to get this oxygen thing figured out... 

Anyway, here are some pictures from the last few days...

Harlie and I right before surgery.

They let me go with her into the OR.  She no longer needs Versed to help her go without being upset.  She just goes.  She cried a little bit right before we left and I asked her if she was scared and she nodded her head yes.  I just told her that it would be a quick one and that we'd be right here when she woke up.  That seemed to do the trick.  It was a quick one, so hopefully I am building up some trust with her.

I had a hard time sleeping the night before surgery.  I was so, so tired that day.  And since the Red Sox were playing that night, I knew it would be another long night.  So the second she got moved to the cardiac intensive care unit (CICU) and I saw that "bed" I jumped at the chance to close my eyes for a minute.  Or an hour and a half.

Being in the hospital will suck the life right out of you!

We brought Harlie's Vest and did her chest PT.  This was the night of the surgery and she fell asleep while getting it.  So, I guess it can't be that bad.

This was the morning of post-op day 1...

Post-op day 1

On Tuesday, we went to the aquarium.  It was great!  There was hardly anyone there so it was very comfortable.  It's the longest she's ever lasted there.  And I know it was her best time there.

Watching the sea lions and seals.

And for the first time she actually touched stuff!  Every time we've ever been it has been so crowded in the touch tank area, that Harlie didn't want to go in.  Well, this time, there was plenty of room.  And the girl could go and get things for her to touch so Harlie didn't have to move all around.  Harlie touched everything!  Some things she needed a little coaxing.  She touched an urchin, a crab, and a starfish.  And then we went to the new stingray/shark tank.  And she touched a stingray.  It was so cool to see her having such a good time.

The top of the big tank.

After the aquarium, we went and had lunch and drinks at a restaurant nearby.  Then we went to the carousel.  Harlie really seemed to enjoy it.  I loved that she loved it, but it made me sad.  All I could think about was how much I wish that her life could be more of those experiences than hospital ones.  This was surgery #40.  I think I might be getting tired of doing this to her.  I think we are all ready for a break.

The night of her surgery was the big Red Sox game in Boston.  We went to dinner and watched the game from there.  The restaurant was about three blocks from Fenway.  It was a lot of fun to be in the middle of such excitement!  Oh, life in a big city.

The bartender opened up a bottle of champagne and I took a hit right into my eye!  It was still fun, though.

The streets were packed.  They actually barricaded all around Fenway so you couldn't walk closer.  If you look in the background of the next photos you can see the building in the background with "GO SOX" in lights.  Pretty cool.

That's it for now.  We are flying home tomorrow afternoon (Friday).  I'm a little nervous about people staring at her tomorrow since it will be the worst day of the swelling and bruising.  But, we'll get through it.

Thank you so much for all your kind comments, posts, thoughts and prayers over the last few days.  It was so much fun to see all the photos on Facebook.  Thank you for taking the time to do that for us.  We are feeling the love and it is helping us stay strong.

Much love,
Christy xo

Post-op Day 1

When we walked into the unit on our way to see Harlie this morning, we met one of her surgeons who was leaving.  He said that she was feisty.  Her face might change, but her personality doesn't!  He also said that there was less swelling than he expected and that she was moving her lips really well.  So, he was happy with how she looks so far.

I think her eye looks really good!

And she certainly is feisty!  No matter what you're doing - even if you're not touching her - she is blocking and shaking her head, "no!"  And she's already lifting her leg.  Granted, she's trying to kick you with it, but still.

When she woke up last night she slowly lifted one hand and really studied what the heck was going on.  Then she lifted the other hand (both hands have IVs) and studied that one as well.  Then she lifted her leg and studied that.  I'd give anything to know what was going through her mind.

I do think she looks really good, all things considered.  Of course, I will take photos each day so you can see her progress, too.

Her mouth looks horrific.  And she flat out refuses to let us suction it, or clean it or touch it, or even look at it.  But, I'm sorry, I know she'll feel so much better without a mouth full of blood!  So, I have to suction it anyway.  She shakes her head back and forth and she's only going to make us hurt her.  If she would only stay still!  I keep waiting for the day when she realizes that it won't hurt (or will hurt a lot less) if she doesn't fight us.  When oh when will that day come???  I totally get that she's scared and is trying to protect herself.  But it kills me to have to hold her down for something that shouldn't really hurt.

She looks so much better when she's sleeping.  When she struggles to open her eyes, you can really see how swollen she is.  And she just looks so pitiful.  The other micro surgeon came in to see her this morning and he said that she looks like she went 15 rounds.  I love honesty and a good sense of humor!

They took her Foley out today, which is good (infection risk).  But is bad because now she has to go potty.  With so many lines (still has an arterial line, two IVs and drainage tubes in her face and leg) that will be a challenge.

She's needed a lot of suctioning today.  I love this hospital (it's very parent-friendly) but the nurses have been a little different when it comes to suctioning.  I learned (almost six years ago if you can believe that!) to suction on the way down and on the way up.  If you don't suction on the way down, you just push the secretions further down.  I've told every nurse - but they only suction on the way up.  So, that's frustrating.  I guess the problem is that the way you learn is the way you do it and it's hard to break the habit.  But, I am surprised that they even do it that way to begin with.  You can see immediately that not suctioning on the way down is a lot more uncomfortable for her. Ugh.

The team discussed moving her to the floor at some point.  I had to put the brakes on doing that any time soon.  They are crazy if they think she can go to the floor (she still has an arterial line!).  I voiced my concerns (at this point it had not even been 24 hours since surgery - slightly premature if you ask me!) and they agreed.  I know getting to the floor means "progress" but um, no.  Not yet, anyway.  I just hope they don't push her too hard.

The micro surgeon said that he hopes we can go home next Friday.  So, that's hopeful.  And he said we'll have to come back for a follow-up four to six weeks later.  They will do some more imaging (CT scan) to see if the bone adhered.

An ENT resident came to look at her BAHA surgical site.  The surgeons looked at it in the OR yesterday and agreed that it was really red and looked like it might be infected.  She's on several antibiotics now, so we're covered either way.  But, they asked ENT to come take a peek.  Except that the ENT resident has NEVER seen one post-op.  So, that was helpful.  Not.  Although when we looked at it, I could clearly see that it wasn't as red as it was the other day.  He said it didn't look infected to him.  So, I guess we'll drop it and leave it alone for a while.  He asked when we'll see our ENT at home again and I said I don't know.  Then I thought about having to take her and how much she'll fight at every single doctor's appointment from here on out for a while.  It's like we're starting over again.  :-(

I think that's it for today.  Thank you for all your wonderful support!  I'll post again tomorrow.
~Christy xo