Baha surgery

Harlie is doing well after her bone anchored hearing aid surgery on Friday.

As I was putting her to bed on Thursday night, I told her that we were going to wake up early the next morning to go to the hospital for a quick surgery.  She immediately started to cry.  While it was so hard to tell her and then watch her cry, I am so glad to know that she understood what I was saying to her.  And I mean "language-wise."  As in she understood the words and what they meant.

I didn't really know what I was going to say ahead of time.  So, I just told her that it would be over quick and that she wouldn't have to stay there.  And that I would be with her the whole time and we'd get through it together.  While I think it was somewhat comforting to her, she still continued to cry a little bit until she fell asleep.  Ugh.  Some moments are so hard.

Waking her up to go to the hospital went well.  She didn't seem upset and I just kept on telling her it would be over quick and we'd be home soon.  Once we got there we had to wait a long time.  She was second case, but the first case didn't show.  You'd think that wouldn't matter much, but they said the first case was a hard to schedule and coordinate kind of case, so they were giving them more time to get there.  So, we had to wait.  I have to say, it doesn't take much for her to be entertained.

Playing with a toy phone, old school style.

Hiding behind a chair.

The surgery took a lot longer than I expected.  I was thinking it would take an hour, but it took more than two before they came to get me.  Her doctor said that it went great.  Actually the exact words she used were "perfect" and "textbook."  I must say that's the first time I've ever heard those words when it comes to her.  She said that her skull was plenty thick enough that she was able to use the larger titanium implant, which will give her better sound quality.  It's so awesome when things go her way!

There are three parts to a bone anchored hearing aid:

1.  the titanium implant (the screw looking piece in the photo below)
2.  the abutement (the cone shaped piece), and
3.  the processor (the actual hearing aid).

The first surgery is to implant the titanium piece.  She implanted two, one is called the sleeper and it is there just in case one of them isn't accepted by the skull.  She put them at a certain angle and distance from where her ear canal should be.  Right now, she just shaved her hair in that area and then stitched up the incision (which is curved).  But during the next surgery, she will thin out her skin in that area a little bit and remove her hair follicles.  Even though she had to drill holes in her skull, I still considered this surgery to be relatively minor.  So I was a little surprised to see her afterwards...

Holy dressing!

Does the bow make it look better?

It took a while for her to wake up.  They checked her pacemaker, all's good with that.  And then I got her up and in my lap.  They had to take out her IV, which is always traumatic.  At this point, she's hyper sensitive to anything when in the hospital - it doesn't matter what you're doing to her, she's going to fight you.  And she's a really good fighter.  The anesthesiologist hung out with us way more than usual.  I think she just wanted to make sure that she was fine since she was taking longer than normal to wake up.  So, she was there when the IV had to go.  Harlie cried and fought and the anesthesiologist was clearly concerned.  I laughed and said, "If you think this is bad, you should try getting the needle in!"  And then I followed it up with a typical husband's kind of response, "She's fiiiiiine!"

I asked the nurse to get me Harlie's chair and the second I showed it to her and put her in it, she was all better.  And then the anesthesiologist said, "You are the perfect mom for her.  I would never be that calm."  But, you get used to it little by little.  And I've learned when I should worry and when I shouldn't.  And when I shouldn't worry - I don't.  I'll have plenty of opportunities to worry later - trust me!

On our way home, stylin' as usual.
She's going to kill me for this pic one day!

She had to wear the dressing for 24 hours.  I was so proud of her.  She wanted to take it off so many times.  But I would tell her no and she would stop trying.  I told her "we can take it off tomorrow."  I took Rooney for a walk and when I got back, I found the boys looking like this...

So supportive!  And so, so sweet!

The dressing came off while she slept.  So, I went on ahead and removed it the next morning while she was still sleeping.  When she woke up the first thing she did was reach for it and she got an "Oh no!" kind of expression.  I told her we were all done with it and she was happy.  Until I had to clean it with peroxide and put bacitracin on it.  Two times a day!  That is not an easy task, let me tell you!

Tonight was the first time we could wash her hair.  Whew!  I was glad to do that! The area of the incision is still really swollen.  It's really hard to tell if it's okay (as far as redness goes) because she will NOT stay still long enough to get a good look.  Like I said earlier, she is hyper sensitive to anything.  Trying to clean it and treat it with the ointment is agony.  For all parties involved.  Our follow up appointment is Thursday.  That should be fun.

Rooney is fine from his surgery on Thursday.  When I picked him up the vet said that I was lucky to be getting him back.  Apparently they all wanted to keep him!  He is so sweet and cute, I am not surprised.  But when I got him his ears were all droopy and his tail was straight.  He was one sad little pup!  The only time his tail curled that night was when I fed him.  Pugs sure do like to eat! By the next afternoon, he was right back to his normal happy self.

Cooper's eye appointment went well.  He's near sighted, but that's age appropriate.  She said his Duane's syndrome is very mild and that she thinks his squinting at objects is him just being a kid.  So, he's good and doesn't have to go back for two more years.

Well, that's it for tonight.  Thanks for checking in!
~Christy

More Updates

All is well with Harlie's belly!  Woohoo!

Saturday afternoon, we took Harlie and Cooper for a walk to a playground nearby.  Murphy was playing with our neighbor so they didn't want to come.  That was a little weird.  Since when does he not want to go with us to the playground????

Anyway, that got Harlie up and walking a bit.  I think that really helped her belly get moving.

It's so nice when they play nice together.  You know, those rare moments!

Walking like a little old lady, but walking!

Good, quality time with the kids...

I forgot to mention in my last post that on Friday Harlie woke up with a very bloody mouth.  I have no idea what that was about.  At first I thought she lost a tooth.  But after I got her all cleaned up, I realized that wasn't it - there were no missing teeth.  Who knows?  Even though she's making so much progress in communication, it still kills me when I don't know what happened to her or if something hurts her.  I don't know why communicating her pain is still so difficult.

On Saturday night Tom and I went out on a date night.  I made him take me to Petsmart so I could start thinking about all the stuff I want to buy for our little guy that we get in TWO WEEKS!  I just can't wait!  More about that later.  And I mean my excitement about his arrival!  I know you can't wait for all the puppy photos!

Anyway, on Sunday, Harlie woke up and her belly was almost back to normal.  What a relief it is to not have to worry about that anymore.  I know it's crazy, but I'm always afraid that it's going to be something seemingly "little" in comparison to some of the bigger hurdles she's overcome, that will have a devastating impact.  As much as I tell myself to not think like that - fears aren't exactly rational.

Later that day the kids went outside.  Tom worked in the yard and made them a little fort with some clippings from a tree.  They loved it.

Finally - a smile!

She is definitely feeling better.  Still walking carefully and guarding her incision.  Unfortunately, her incision was bleeding, which I found odd.  We were five days post-op on Sunday.  I took a picture of it and sent it to Katie at the hospital.  She called me this morning to tell me that they need to see her and before our scheduled appointment on Friday.  So, we go back in the morning (Tuesday).  They are going to have to take off the steri-strips and clean it to see what's going on.  I really hope it's not infected.  And I totally dread the process of cleaning that incision!!!  I debated on whether I should post the photo, but I figured if I have to see it, so should you.  Hey, I said I was going to be more honest!

On Sunday night (going back and forth a little here, sorry) two things happened that I consider amazing forward progress with Harlie's oral feeding.  I think it's pretty crazy how she seems to do this (make jumps forward) after a hospitalization and/or surgery.  She's such a crazy kid!

Anyway, she asked to eat dinner with us.  I mean that she wanted to sit with us at the table AND eat with us.  This is something we've wanted for years, but just haven't been able to make it happen.  I've tried to feed her at the table with us, but it never goes well.  She always has a better feeding when I can focus on her.  By the time I got her food all ready, everyone was gone from the table and she no longer wanted to eat.  Next time I'll be ready.  We don't always get to sit down at the table, so we'll just have to see how things go over time.

The other thing she did was ask for ice cream!!!  On Sunday night, we took the kids across the street to Brusters for ice cream.  We all just got the baby cones.  Well, except for Harlie of course.  After a few minutes, Harlie signed ice cream.  I asked her if she wanted some and she nodded yes.  So I made her say, "I want ice cream" on the communication device and Tom got her a cone.  And for the first time EVER, she willingly licked ice cream.

We were so excited!  We were all, "Good job Harlie!" and "Tom, take her picture eating ice cream!" and I couldn't help but wonder what all the people around us were thinking.  They were probably thinking we were a bunch of freaks.  Oh well.  We were happy, so who cares.

Today (Monday) she did well, I think.  She had a good morning, but then seemed to feel bad in the afternoon.   I gave her some Tylenol.  I tried to get her to tell me that she hurt - but she would not confirm or deny.  But, she was holding her incision (which I covered with gauze and tape, by the way) and she just looked like she didn't feel good.  So, I figured she probably was hurting.

Tonight was a Daisy meeting.  I hate that she had to miss it, but I just didn't think she was up for it.  And I was afraid that she would hurt herself by being more active than she was ready for.

Well, I need to get to bed.  We have to leave the house before 6am to make it to the hospital on time.  Hopefully it will be a quick trip.  I'll let you know how it goes!

Thank you!
~Christy

All is fine

Sorry it has taken me a while to update.  I hope you weren't too worried.

Things are fine.  We went to the appointment yesterday, but we went to the wrong place.  Her surgeon has clinic in Fairfax on Tuesdays, which is where we've always seen her.  But yesterday was Wednesday.  And I didn't realize that on Wednesdays she has clinic at the hospital.  Ugh.

They called her, but there was no way we could have made it to the hospital before the surgeon was supposed to be in the OR.  So, one of her partners who has clinic in Fairfax on Wednesdays "worked us in" more than two hours after arriving.  I was kicking myself the whole time.  If only one of us had been more clear... ugh.

The problem is that I really wanted to talk to her about more than just her incision.  Harlie will not bear weight on the right side.  She limps in the walker and will not put the heel of her right foot on the floor.  So, I asked him about it and he had nothing to offer.  I would never choose that guy to be Harlie's surgeon.

And he was not concerned about the looks of her incision.  But he also said that her stitches don't itch.  Uh-huh.  Right.  I guess I'll call him in the middle of the night when she is beside herself with itchiness.  I must be dreaming.

And they took x-rays.  He was pretty much telling us good-bye when I asked him if he was going to look at her x-rays.  So he went away and then came back and said "they look fine."  Nice of him to bring the x-ray in so I could see it, too, and make sure that he was looking at the ones taken that day.  Not.

So we left.  I spent over $40 in gas, almost seven hours of the day, my mom came over and watched Cooper and my neighbor picked up Murphy after school - all for nothing.  Which I admit was just as much my fault as anyone else's.  Grr!

So, we are just going to keep a super close eye on things.  We have an appointment to see her surgeon next week.  Hopefully things will get better and all will be fine.  But today she has pointed to her back and her leg several times and signed "hurt."  This is the worst recovery of any surgery she has ever had.  It has been miserable from day one.  I wish I could blink my eyes and have her be all healed and back to herself 100% again.

We'll get through it.  I know.  It will just take time and patience.

On a positive note - I do think it was beneficial for her to go back to that office and not get hurt by a doctor.  She did cry as soon as we pulled into the parking lot.  But, a few more office visits that don't hurt and I think that will really help.

That's all I have time for now.  Hopefully I'll be able to get some posts written in the next few days.

Thanks!
~Christy

Back to the doctor

Real quick one...

Harlie's incision is looking red and angry.  Not the whole incision - just at the top where the infection was.  We've been watching it closely and hoping that it would get better.  I took a picture of it on the 13th and then again on the 17th and there is a noticeable difference.

I, of course, was thinking, "eh, it isn't that bad."  You can bet I wanted to believe that, too.  She's been on several antibiotics since May 2nd, 16 days now (most of that time getting IV antibiotics).  How can it not be getting better?  And the antibiotics are awful on her.  I couldn't wait to be done with them!  Which, was yesterday.  So now she's officially off the antibiotics.  Which, if the incision is not looking better, is a bad thing.

So, I couldn't ignore it any longer.  Plus my nurse told me I had to get my head out of the sand (I'm paraphrasing here, she was much nicer about it) and send the surgeon pictures.  So, I did.  I sent her several pictures and she responded by asking if we could come see her today (instead of next week).  Ugh.

Here are the pictures (because I know you want to see, and if you don't, I would like them in my blog for record keeping purposes, so look away if you don't like stitches)...

May 13th, right after removing the dressing. 

May 14th

May 17th

May 17th

See, I don't think it looks that bad.  But, subconsciously I don't want it to be that bad.  And the bottom line is that it should be looking better - not worse.  And it definitely does not look better.  And she's no longer on the antibiotics, so how long till it looks way worse?  Plus, it had some white stuff coming out of it, which may be totally normal, but I don't know.  So, we just can't risk it.  I do NOT want to land back in the hospital!!!  

Plus, I want her to see how she's not putting any weight on her right foot/leg.  I'm worried about what might have happened when she lost her balance the other day.  So, getting x-rays today will be good.

Okay, must run.  Lots to do to get ready to go.

More later!
~Christy

Ewwww! Gross!!!

**WARNING**

Gross pictures to follow.

So, over the weekend, Harlie seemed to get ultra sensitive about her face, mouth and jaw area. She kept pulling her trach collar away from her jaw when I put her to bed. But, I didn't think much of it. I just thought she was being weird. What a great mom I am!

And she started really crying when we would try to brush her teeth. You know, we can only brush the outside of her teeth since her jaw is still wired shut. But, normally she would let us in there to brush what we could.

And she started to smell a little worse than normal. Well, her new normal - with her jaw wired shut. Just a weird, funky odor. My poor sweet girl!

Anyway, on Saturday I took some video of her (that will be posted soon I hope) and when I watched the video on my computer I noticed that her incisions looked really red. But, again, I didn't think much of it.

On Sunday morning, I noticed that she had some dry, powdery looking stuff on her incisions. I just thought it was dry secretions, so I got a warm washcloth and tried to clean it off. Well, she pitched a holy fit crying and carrying on. Oh, I'm so terrible that I just gave up and said, "Geez, Harlie. What's your problem!?" And got her dressed and went on about our day.

Finally on Sunday night, I really looked at her incisions and there it was.

Grossness.

They were really bumpy and swollen - like not equally swollen - swollen in different amounts in different areas - creating a bumpy kind of look. And it looked like there was goo in there. Ew! Definitely infected. Ugh!

But she didn't have a fever! And she wasn't acting any different - as long as you weren't messing with her face! So, I knew first thing in the morning it was straight to the doctor.

So, Brandy arrives this morning. While Harlie was still sleeping, I wanted to show Brandy what it looked like. So, I got a flashlight and we went in to have a look. Well, Holy Infection! It burst during the night!!!! Blech!!! There was pus everywhere! And there is this one spot - the spot that took the longest to heal initially - that is like a hole in her jaw. It is so yucky, I just can't do a good job of explaining it.

So, of course, I took a picture.

I figure if I have to see it - then so should you.

But, I must warn you. The following photos are not for the faint of heart. To me, they're pretty gnarly. But, maybe that's because it's my little girl. Maybe looking at photos like this isn't that bad if it's someone else's little girl. I wouldn't know, as I've not ever seen photos like these. Just another perk of being me and living my life I suppose.

So here you go...







Her doctor took some pus for a culture. That was no fun. Harlie was in so much pain! He said we'll hear back in the next few days. Hopefully we'll hear back before Thursday, just in case it has any impact on getting her wires out. He also gave her a shot of Rocephin - which is what he calls "the big guns" as far as an antibiotic that he can give her. Oh boy, after he had to get some pus for the culture (which was super gross, thank God that Brandy traded places with me so she was the one who got to see that up close) and she got the shot (which the nurse said burns pretty bad) Harlie was one unhappy little girl. Oh, I felt so bad for her.

So, after I comforted her (which she is beginning to let me do, thankfully) and she calmed down, we all started to pack up and put on our coats. Then all of a sudden, Harlie started crying again. Like a real sad cry. And I said to Brandy, "What's her problem?"

WOW! What a crummy mommy I am!!! Luckily, I realized it as soon as I said it.

My poor little girl has a gaping, pus seeping hole in her jaw, she smells like an infection and she just got a burning shot in her leg!!! Of COURSE she's crying! Heck, it hurts my stomach just to look at her! Yet here I am, pushing her to get over it and move on the next thing. Ugh. In my defense, that's probably a self-protective instinct coming into play. But that's too deep of a topic for this post.

Anyway, I simply can't imagine what it feels like to be her. What a tough cookie she is!!!

Well, that's all the grossness I have for today. I'm sure you appreciate getting to the end of this post! I'll certainly let you know how she's doing tomorrow!

Take care,
Christy