Goodbye stitches!

The appointment with Harlie's surgeon went well.  It was in Fairfax.  When we were just a minute or so away from arriving at the building, Harlie started crying.  But we were honest with her and told her the night before that we were going to the doctor (she cried then, too).

Anyway, they removed her stitches, which is great.  Although the actual removal of them was not fun for anyone involved.  We put her on her belly across my lap and Brandy held her hands and Gabe (the guy removing the stitches) sat on her legs.  There was NO way to make her stay still.  We even gave her a dose of valium before the event, and it did nothing to help.  That girl has just had too many drugs in her short life.

Anyway, Gabe did a great job despite the moving target.  I wish she was capable of understanding that if she just stayed still it would hurt less and be over quicker.  But she doesn't trust anyone.

After that we had her walk down the hall so her surgeon could see what she's doing with her right leg.  (She is doing so great walking in her walker.)

Look how straight she is!

In her ankle braces and tennis shoes she was putting her whole foot on the floor (when barefoot only her toes touch the ground on her right side).  Her surgeon said that her x-rays look great and the screws haven't moved, so she is probably having a hard time getting used to her new structure.

Much happier now that her brace and shirt are back on.

Signing "let's go!"

We don't have to go back for four weeks.

Sounds like a break, right?

Wrong.

I've got some other stuff in the works.  This is going to be one very busy summer.  You know how it is.  So many doctors, so little time.  Ho hum.

I wish I were kidding.

I hope to update you soon.  Thanks for hanging in there!
~Christy

Another trip...

to the doctor.  This was her planned post-op appointment, with her surgeon.  Actually, it was originally made for her cast to come off.  Can you believe it?  Can you imagine if it was still on?  Well, I guess that would have never happened considering the circumstances.  I'm sure we would have discovered her infection before now.  I hope.  Doesn't matter!!!  We found it in time and all is well now.  To think of another scenario makes my stomach hurt.  But it feels like it was forever ago that the cast came off.  I guess a lot has happened since then.

Anyway, I'm hopeful she'll be able to take out her stitches.  I just feel like Harlie would be more comfortable once they are gone.

Unfortunately, Harlie is still not bearing weight on her right side.  And she's continuing to sign "hurt" and point to her lower back.  I have no idea what to do for her.  And the other day she stopped laying directly on her back.  Hopefully her surgeon will have some insight.

And she also has some weird skin irritation.  We have no idea what it is.  I took her to see her pediatrician on Saturday (for another matter which appears to be resolved now - it's been a busy few days) and even she didn't know what it was.  We've tried different creams, but it doesn't appear to be responding.  So, maybe her surgeon has seen it before.

I cannot believe how incredibly busy things have been.  Yesterday I must have made 15 phone calls/e-mails - all medically related - for Harlie.  And I still didn't get it all done.  And there's something fairly exciting in the works...more on that later!

Hopefully, soon I'll be able to spend some time on the computer to update you on what's going on here.  

Thanks for checking in.  I'll let you know how the appointment goes.
~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

Brief Update

We have been so busy since coming home last week.  I'm hoping that things will settle down and we'll be able to get into a routine soon.

Murphy's party was Saturday and it went really well, I think.  The boys seemed to have a good time.  And since we had it at our house, our spending was at a minimum, which was a plus.  It is very clear to me that kids do not need to have expensive parties to have fun.  Photos to come later.

Today I had Harlie's transition into Kindergarten IEP (Individualized Educational Plan) meeting.  That took  two hours.  So much to talk about and get on paper.  I now have a much better picture of what her day will look like when she starts in the fall.  Oi.  I can't believe she will start Kindergarten in just a few months.  I'm excited but so, so scared!!!  There are so many things I want to tell you about - but I'll have to write about it later.

We also had physical therapy today.  Over the weekend Harlie was walking (while holding on to furniture around her) and she lost her balance and it clearly hurt her.  She immediately started crying and had to sit down.  I asked her if she was scared or hurt and she signed "hurt."  After that her walking was worse than before.

Anyway, she did well.  I think she is doing great - all things considered.  She definitely did more at PT than she does at home.

Well, it is late and I'm still struggling to catch up on sleep after going 9+ nights with very little sleep.  Although I think my tiredness is more from emotional exhaustion than lack of sleep.  It is very draining to send your child into the OR three times in seven days.  At least that's my take on it, anyway.

I will have lots of updates coming soon!

Thanks!
~Christy

A have 4 letters for you...

PTSD.

Just kidding. Seriously, we're fine.

We are home and all's well.  Had a little birthday party celebration for Murphy last night after dinner.  Harlie watched Ice Age and laughed for like an hour straight.  It was great to know she was laughing.  But I would give anything to know what her laugh sounds like!

I have so much catching up to do here at home.  The amount of paperwork that comes through my house is insane.

We got Harlie to walk a little - but she needs a great amount of support and she has no sense of balance (probably because she has no strength left in her legs).  I have no idea how long it will be before she can walk again.

Her back brace is going to take some getting used to.  Not just by her - but by us.  It seems to get loose pretty easily.  And I feel like it doesn't stay in position, which makes me worry.  Three months.  Good times!

That's all I have time for now.  Just wanted to let you know we made it safe and sound.

Thank you for all your support!
~Christy

Happy Birthday Murphy!

It is so hard to believe that this little five-pound baby...

is SEVEN years old today!

Here are a few pics from years past...

Murphy has always been an easy kid.  He is such a sweet guy.  And he's become a great - and patient - big brother.

I remember how badly I wanted a baby.  And he didn't happen easily.  It took 12 long months! And I felt like the luckiest person in the world beginning with the first second of his pregnancy.  And I still feel like that today.   I entered a new kind of happy when he entered our lives.  We are so, so blessed!

And - as a side note - Harlie's dressing's been changed, all's well, and we get to go HOME!  YAY!

Happy Birthday Murphy!  We love you so much!
~Christy

Almost there

Hopefully I've had my last dinner in this place for a while.  A long while, preferably.  

When the docs rounded this morning they put her as a priority discharge for tomorrow morning.  Our night nurse is going to give her some pain meds at 5:30am and then sometime around 6am one of the ortho surgeons is going to change her dressing.  Then we are free to go!  Well, assuming it's healing nicely and looks good.  They've already written her prescriptions and the discharge nurse has already faxed all orders to wherever they're supposed to go (home nursing company, medical supply company, medicaid case worker, etc.).  And they've already briefed me on taking care of her incision and brace.  

We are all ready!

She asked for the VECTA today (a distraction machine that is supposed to reduce the amount of pain meds used due to its calming effect).  Although she wasn't looking for something to calm her down.  She was looking for something to play with.  There are buttons for the patient to press that changes the color.  

And I got her a balloon today.  She loves balloons, and I thought this one was pretty darn cute.

She's actually playing and having fun!  And she didn't have any pain or anxiety meds today.  I just can't wait till she realizes that she's going HOME!!!!

I am so ready to get my little girl back!  I know she has to feel so much better.  I tried to get her to stand today - but she did not want to.  I wasn't going to push her.  I was just trying to see if I could move her brace down - so I could see if it is shifting when she lays down.  But, she would not hold her own weight.  I'm sure we'll be able to get her to walk when we get home.  She might need to use the walker for a bit.  

Those leads are giving us a fit again.  I don't know why they act up more at night than during the day.  I guess it's just my good fortune.  But, unfortunately, tonight's nurse says, "Mom, she won't let me touch her" which means I'm going to have to get up every single time to fix it.  Of course, she doesn't let me touch her, either.  You just have to have a take charge attitude and not give her a choice in the matter.  I'm about ready to tell them we don't need to see her respirations at this point anyway.  Heart rate and oxygen saturations are just fine.  Oh, I just want to be gone from this place!

Well, must get some sleep now.  Tomorrow's a new day!  

~Christy

Recovering

Another successful surgery over.  Hopefully that one will be the last for a little while, at least.

Her surgeon said that the wound looked clean - they washed it one last time and moved some muscle around, loosened up her skin (so there wouldn't be so much tension) and closed her up with stitches.  Unfortunately, she couldn't use dissolvable stitches this time, so her scar just got uglier.  But, since it's on her back she won't have to see it, so that's good.

She's now wearing her brace and it is so much better than the cast.  Much more low-profile, which is a very welcome change!

I hope she finds it comfortable because she's going to be wearing it a while.  Like a bare minimum of THREE months!  For 23 hours per day!  Ugh.

Here's how it opens up...

I tried to get a picture of the dressing, but she was not being cooperative.  But you still might be able to see how long it looks.

This is what she looked like when she came out of the OR...

Totally hiding from the world.  Can't say I blame her, either.  This stay's going to be a hard one to get over.  Too much in too short of a time span.  If the girl wanted anything I'd get it for her.  Maybe it's a good thing she doesn't ever ask for anything.

It kinda cracks me up how they cut a gown for her g-tube.  I don't know why.  Every single onesie she's had in her life had a hole in it.  Guess we'll have to go back to holes in her shirts for a while.  I'll just get some plain, inexpensive tank tops to go under the brace.

Taking her back down to the OR this morning was not easy.  She is tired of all this and her pleading eyes told me so.  I wish so much that I could save her - rescue her from one of these situations one day.  Instead I just stand there and watch them take her.  I signed I love you and she looked away and didn't sign it back.  Oh, how that hurt!  But, afterwards, in recovery, I signed it again, and she signed it back.  She lives a complicated life with complicated feelings.  It's no wonder she doesn't act like a normal 4-year old little girl.

She is now on pain meds.  On a schedule today, and then as needed starting tomorrow.  And I asked for something to help her anxiety.  So they put her on Ativan.  I don't know why I didn't think of it sooner.  After her spinal fusion surgery they automatically put her on Valium.

Oh - and her surgeon wants to do a dressing change on Wednesday - then we can take her home.  I'm glad to finally be able to think about it - but disappointed we have to wait till Wednesday.  I really wanted to be home for Murphy's birthday.  But my social worker is going to work to get everything done ahead of time, so that when the surgeon does the dressing change, we'll be ready to go.

Then we see her surgeon again in two weeks.  And I'm sure a bunch after that.

Well, that's it for now.  Thanks for all your love and support!
~Christy

Round 3 in the OR...

It is now 12:50am, officially Monday morning and Harlie's still up, with no signs of being tired.  I turned off the TV at 8pm, brushed her teeth and her hair, read her a bedtime story and took out her hearing aid.  Lights were off by 8:30pm.  

They tried to do vitals at 9pm.  She was moving too much and would not stop so they could get an accurate blood pressure reading.  I told them to skip it.  

She's told me she's itchy about 15 times.  I've changed her diaper at least five times since 7pm.  These new antibiotics she's on are taking it's toll.  I forgot to tell you that her last several IVs have blown.  On Saturday, instead of doing another one, they agreed to switch her over to an oral antibiotic.  It's worse than the IV one.

About an hour ago she asked for her game (iPod touch).  I was hoping it would calm her down and make her sleepy.  So, I gave it to her.  Then she asked for her hearing aid.  And without even thinking about it - I said no.  She asked again, but I held my ground and signed that she needed to go to sleep.  She stopped asking and started playing.  

And then I realized that I just told my daughter that - no - she isn't allowed to HEAR.  And I feel like crap.  For so many reasons.

She can't sleep because she's itchy.  So, I got up to try and scratch her - again.  And discovered that her bed was soaking wet.  They are giving her water through her g-tube until 2am so she'll be well hydrated for surgery in the morning (when you are hydrated, it is easier to get IVs in). The med port came open and they "fed the bed" instead.  Darn it!  She only has 45 minutes left to get water now.  And there's no telling how much actually stayed in her belly.  Grrr!  

So, I asked them if they can give her something to help her not itch so much and go to sleep.  

She has a dry bed now.  But because of the humidity from the trach collar, the leads that monitor her heart rate and respirations are not staying on.  So, the monitor starts beeping.  It's really obnoxious, if you ask me.  And don't even try to put the leads back on.  She fights you and says "ow" over and over.  Which is ridiculous because there is NO way that hurts.  She just doesn't want anyone touching her in any way.  And I'm starting to lose some patience.  Not all of it - just some.  She's got to learn to pick her battles, for crying out loud.  I don't know when that's going to happen, but I will be very glad when she finally gets it.  All her fighting only makes everything harder on her.  

It is now 1:28am and her iPod's been taken away, she's still tossing and turning, yelling "Mama" and signing "itchy", the monitor is still beeping and I've got the freaking hiccups.  And now I'm itchy.  

Ahhh, the meds are here.  If only there was some for me, too.

It is now 6:30am and we both finally fell asleep at some point.  Thankfully!  They will be here in 20 minutes to come get her and take her to the OR.  Hopefully everything will go as planned!

Thanks,

Christy

Happy Mother's Day!

First of all, Happy Mother's Day to my Mom, my Mother-in-law, and all of you Mom's out there!  I hope you're all having a great day.

I'm sorry it's been a while since my last post.  Everything is fine here and Harlie is doing "well."

We are in a holding pattern until tomorrow.  The doc came to get consent for tomorrow's surgery (if her wound looks good, they will clean it one last time, then close up her incision) and said she is first case.  That's great because that will give her the most time to recover on Monday - hoping that she can go home on Tuesday.  I would really, really like to be home in time to celebrate Murphy's birthday on Wednesday.  It kills me to think he'd have a birthday without me there!  He's only turning 7 - I'm not ready for that yet!

Friday was a busy day.  Heather, our social worker, came in with some Beads of Courage for Harlie.  I'll  talk more about this later - but it was the first time that Harlie picked out her own beads, which is very exciting!  And I really think that turned the whole day around for Harlie.  She was so playful after that!  And Heather brought her some coloring pages and toys.  Harlie colored Tinkerbell and wrote her name on it.

Then, Emily, a Speech Therapist came to spend some time with Harlie.

Then Brandy came up to visit.

It was great to see her and I know that Harlie enjoyed seeing her, too.  Plus, I'm sure it felt like normal again, to have us three hanging out.

Tom surprised me by driving up Friday night.  The plan was for him to come up Saturday afternoon because he had something to do for Murphy on Saturday morning, but he found out it wasn't totally necessary, so he came up Friday night instead.  And since we had a great nurse (I really feel like we've been so lucky this time around) we went out to eat.  Our nurse said she sat in the room with Harlie and charted so she wouldn't be alone.  We went to dinner at the Lebanese Taverna in Adams Morgan.  It has become a favorite of ours.

On Saturday, we had lots of visitors, which was awesome!  My Mom, niece (Maggie) and sister-in-law (Nancy) came up to spend the day.

Nancy, Maggie and Harlie

My mom and Harlie

And Tom's sister (Kristie) was in town with her daughter for a cheering competition.  So, Kristie and Tayne and a friend of hers came to visit, too.

Kristie, Kaylee, Harlie and Tayne

It was a room full of love and laughter for Harlie.  I know she loved the company, even if she doesn't always show it.  I know that it has to be so much more enjoyable to hang out in a hospital room full of laughter than one that's quiet and boring.

The weekends in a hospital can be so depressing.  It is so quiet and food is slim pickin's.  It's easy to start to feel down.  So, the fact that a Saturday was like that was great!  Tom and Maggie when to get Five Guys burgers for us all for lunch.  Yum!

After they all left, we went to dinner.  We went to Marvin (named after Marvin Gaye).

Marvin, on U Street

It was so good, I can't even put it into words.  Seriously one of the best meals I've ever had.  We had the Normandy Moules Frites (mussels and fries).  The fries are served on the side with three dippers - ketchup, wasabi mayo and curry mayo.  They sound disgusting, but the wasabi and curry mayos were awesome!  The mussels are served in a big bowl and were in a creamy sauce with chunks of smoked bacon and bleu cheese.  Seriously - the BEST thing I've ever had.

Then, as my meal, I got the shrimp and grits and fried oyster appetizers.  So, so good!  Tom got the fried chicken and waffles.  Weird combo I think, but he said it was awesome.

And we just had to get some drinks, of course!  I got a dirty martini, which was perfectly made  And Tom had a Goose Island Fleur beer.  It was really good.  After we finished eating, we took our drinks to the rooftop bar and stood around people-watching and just enjoying being in the fresh air.

Anyway, it was a fabulous dinner with the best service ever, and we really enjoyed the whole experience.  And if you're ever in DC - I highly recommend it.

We have the same nurse today that we had yesterday and she's great.  She only has one other patient right now, so we are going to go get some lunch.

Oh, and I finally started reading The Help.  I just started it last night, and I am hooked!  It is so good!

Tom is going to leave to go home sometime this evening.  And hopefully, he'll have to turn around and come back and get us on Tuesday.  My fingers are crossed!  She is so over being in the hospital!

This morning, this is what the cafeteria looked like...

So now you can see how great it was to have a room full of visitors!

That's it for now.  Please keep your fingers crossed that she's been healing great and all will go as planned tomorrow!

Thanks so much for all you support and love!  And Happy Mother's Day!
~Christy

A scared little girl.

 Here she is hiding under the covers.  Her left arm has an IV, and she's got it tucked under the blanket.

Can you see how sweaty she is?  And she's still under the sheet!

Okay, I'm going to go and get something to eat.

Thanks!
~Christy

Waiting for Monday.

We moved today.  We are officially in the Heart and Kidney Unit (HKU) vs. the CICU.  We had one of our favorite nurses today in the CICU and our nurses on the HKU seem to be really good, too.  We still have a private bath and shower so I'm pretty comfy, all things considered.

Last night was our best night yet (no beeping!).  We both slept really well.  Our night nurse said that neither one of us moved all night.  And he tried his best to do as little to Harlie as possible.  He said that she kicked the blanket off her during the night, so he could see all of her IVs without having to wake her, which is great.  She normally doesn't like blankets on her - but she is using it as a shield to protect herself and hide.

Since I got a good night's rest for once (and had a nurse that I know is great), I went for a run outside.  Wow - did that feel great! The weather was perfect - a little chilly at first, but perfect once you got warmed up.  And the sun was shining.  Ah, what a little fresh air will do for your spirits!

So, Harlie is very scared and untrusting this stay.  The second anyone walks in the door, she looks at them and says no while signing no AND shaking her head no.  She is using all she's got to get her point across.  No matter what the question - the answer is NO.

Everyone wants to say "I'm just looking" and have her stop fighting and start cooperating.  But, every time she's ever heard that, it has been followed up with a stick.  It's always struck me as odd that they would say "just looking" as they are trying to find a vein to stick.  I mean, I get that they are, in fact, looking - but she's well aware that looking means sticking eventually.

When we moved to another room earlier, they put her in a different bed first.  She saw the other bed and started crying.  For all she knew she was headed back to the OR.  I told her (and signed) that we were moving to a new room but that didn't appear to bring her much comfort.  She just doesn't trust anyone - including me.  I've had to hold her down many times too many. :-(

She's not up for playing or coloring yet.  Maybe I'll work on that tomorrow.  And I requested speech therapy while we're here.  It's the first time I've done that.  The reason I did it is because when we went to lunch yesterday, there was a table set up displaying hearing aids and a communication device (just like Harlie's).  So, in passing I said, "My daughter has that exact one" and then we started talking.  It was a speech therapist.  Huh.

I don't know why I've never thought of that before.  We walked away and I started to think that maybe it would be good for an ST to come and show her some things on her device - medically related, or hospital related.  Maybe things she could say to a nurse?  And maybe it would be good for someone to come and play with her - that's not me.  She loves her therapists at home - all three of them.

So, an ST came up earlier, but she didn't know that device - so she's going to send the same girl I spoke to at the table yesterday to come up tomorrow.  It would be so good to see her play a little.

Three more days of just hanging out.  Waiting.  Hopefully it will stay like that - with no more unexpected trips to the OR.

The surgeon's PA (physician's assistant) came by to see Harlie today.  She said that if everything goes well on Monday and the wound looks good and she can close it as planned, we should be able to go home Tuesday or Wednesday.  She will go home in the brace and she'll have to wear it through summer most likely.  She'll have to wear it all the time - only removing it to bathe.  She said that we are going to have to be really tough about it.  It is so important to limit her movement while the bone is trying to fuse together.

So, I'm guessing that means no gymnastics?  Darn it all.

Well, that's it for now.  I'm going to try to use the next few days to get caught up with some blog posts I've been meaning to write.

Thank you so much for reading and caring!!!
~Christy

Back in the OR

Around 8pm last night the wound vac stopped working.  This was very unfortunate.

Beep, Beep, Beep.  10 second pause.  Beep, Beep, Beep.  10 second pause.  Beep, Beep, Beep.  10 second pause.  Beep, Beep, Beep.  10 second pause.  Beep, Beep, Beep.  10 second pause.  Beep, Beep, Beep.  10 second pause, etc.

For the next 14 hours.

The night nurse couldn't fix it.  So, he called ortho.  They came around midnight and fiddled with it for a little while.  But, it was clogged.

I woke up around 2am and found Harlie still watching TV.  She was watching How to Train Your Dragon for the fourth time that day.  I tried to take out her hearing aid but she wanted nothing of it.  She did sleep a lot that day, so I guess she wasn't tired.  I tried to go back to sleep, but I wanted to take out her hearing aid and turn off the TV when the movie was over, and that incessant beeping was maddening.

About an hour later the movie was over, so I took out her hearing aid and turned off the TV.  She cried but then was asleep two minutes later.  I, however, could not go back to sleep.  That damn beeping.  They tried to silence it and cover it to at least make it a softer sound.  I heard them saying that it had no vacuum.

I tried to sleep despite the beeping.  But, I couldn't.  And it was a sealed system, so I thought what could be the harm in just turning it off?  So that's what I did.  And then I went back and tried to go to sleep.  But, then I started to worry that I had not made a good decision.  So, I got up and found our nurse and told him I turned it off.  He looked mad.  He went and called the doc to let her know and he told me that she was "upset" that I had done that and that she wanted it back on.  Grrrr!

Eh, sleep is overrated anyway.

Since the wound vac wasn't working, they had to change the dressing.  So, that meant she had to go back in the OR.  She was originally scheduled to go back in on Thursday.  They just moved it up to today.  They stopped feeding her at 4am and she went back in to the OR around 10am.  They irrigated and debrided the wound again, replaced the dressing, put the wound vac back on and measured her for her back brace.  After the procedure they put the cast back on her.  The plan is to put her in the brace after Monday (it takes a couple of days for it to be made).

Her surgeon said that the wound looked good and that there was no more pus or necrotic tissue.  And she said that she thinks she'll be able to close it up (with stitches) on Monday.  So, as of right now, she's scheduled to go back in the OR on Monday.

Only the cool kids get to go into the OR three times in seven days.  I'm beginning to think Harlie is an overachiever.

My mom and sister came up today to hang out with us.  That was really nice.  And it made the day go by faster.  So, thanks Mom and Sandy!

There's more I could write (no surprise) but I am falling asleep as I type this.  So, goodnight all!

Thanks for reading!
~Christy

9 pm Update

Jennifer came up to visit today.  She went by my house and picked up a bunch of stuff that Tom packed for me.  You know I have to move in.  So now I have my computer.  YAY!  Now I can write MORE!  And upload pictures!  No groans please!  

So, nothing new really to report on.  Just that Harlie has not gotten any pain meds since last night - which completely floors me.  The meds are available to her - she just hasn't indicated in any way that she's in pain.  She's taken a few good naps and she's watched a couple of movies.  

Nothing has really changed since my last post.  Except that ID came by and said that they believe the infection was caught before it went into her bone or hardware.  So, that means a shorter antibiotic course.  YAY!  As long as she's here she will receive IV antibiotics.  And depending on what the culture grows, they might be able to switch her over to an oral antibiotic, which means she wouldn't come home with a PICC line.  

However, it has come to my attention that you can, in fact, go home with a wound vac.  

Oh, Lord.  

I'd rather have the PICC line.  I'm crossing my fingers that it doesn't come to that.  But we won't know anything for a few days.  It all depends on how Thursday's procedure goes.  

So, without further ado, here are the pictures.  They are not in order because I think the first picture is what you see on Facebook, and the first picture is the gnarly one.  And I didn't want it to do that.  Please know that there is a gross picture coming.  

Here she is getting the last few look overs by some of the OR team.  When we got to this room, she cried.  So sad that she knows that room so well.

This was in the casting room earlier in the night.  It was taken right after they found the infection.  Since they had to completely split the cast in the back, they had to wrap new casting material around her waist to keep the cast secure until they got her in the OR.

Watching a movie on the iPad, trying to escape reality.

This was just a few minutes before they took her to the OR.  Another case of not actually being happy, but trying to look it anyway.  Even Harlie's trying to muster up a grin.

And here is the wound.  Holy Infection, Dr. Blakemore!

I was holding Harlie across my lap (tummy down) and Heather was sitting next me helping support Harlie's head.  When they pulled back the cast and we all saw her incision I leaned my head into Heather's shoulder and Heather said, "I don't know who to comfort!  You or Harlie!"  I said, "Me, of course!  I'm your friend!"  Then she said, "Okay I have to go to the liquor store.  I'll be right back."  You know, you just gotta love funny people.  Who know you so well.

I feel terrible laughing when Harlie's in so much pain.  Not because she's in pain you understand.  I have to find the humor in a situation.  It's just the way I handle stress and pain.  But I think by this point, we had taken out her hearing aid since the cast saw is so loud.  So maybe that muffled the sound of her mother's laughter when she was writhing in pain.  Oh, my sweet, sweet girl.

This is her wound with the wound vac in it.  I think it's a sponge that is in the open incision that has a light suction to do... something to make it heal better and faster.  Or something like that.  It's really not something I want to know much about.  But I'm pretty sure that now that I've said that we'll be going home with one and I'll have to anyway.

Here's the new cast.  It has a hole in the front for her g-tube and a hole in the back for the wound vac.  It does not go around her leg.  So she can bend at the waist.  As of right now it is very close to her trach and it is making access quite difficult with the trach collar.  If they wanted to send her home in this cast I would not agree.  But, they are changing it on Thursday, so we'll get by for now.

Here she is napping late this afternoon.  In fact, she was sleeping so hard that her nurse was able to change her IV dressing without waking her up!  Jennifer told her that she just got herself a new job - home healthcare for Harlie!

Earlier today she asked for water.  So, she drank a little bit.  She also drank a little over an ounce of Pediasure.  But, I've been told that good nutrition is so important for a wound like this to heal - so I am not pushing her to stay strictly on oral feeds.  So, we are going to tube her two cans over night tonight.  I will try to give her some Pediasure by mouth tomorrow - but I'm sure we are going to have to tube her most of her nutrition while in the hospital.  And that's okay because I know she will bounce back to her norm when we get her home.

It has taken me a long time to write this post (so many interruptions!) so it is now 9:30 pm and when we changed her diaper tonight, she clearly indicated that she was in pain.  So, I asked the nurse to give her some pain meds.  They are trying Nubain instead of Morphine.  Morphine makes her so itchy.

Tomorrow my mom and sister are coming to visit.  So far, this stay is going great!  I love having visitors!  And we got lucky this stay.  The CICU is full, so we are in an overflow room, which is an HKU (heart and kidney unit) room (the floor) but it is being used as a CICU.  So, we get a bigger, more comfy room with a couch, private bath and shower, and you can eat in here!  And we still get CICU nursing!  Isn't that great?  It's the best of both worlds!

So, that's it for now.  I will write more tomorrow.  Thank you for all your support!!!
~Christy

Noon update

Harlie seems to be doing okay. She actually got a few hours of sleep this morning. But for most of the night something was being done to her. I slept some - maybe two to four hours with some interruptions. At one point I woke up and could tell there was a lot of activity in the room. I asked the nurse what was going on and she said that her blood pressure was trending low. And her blood gases weren't great. And because of those things they have not given her any pain meds since a dose of morphine right after surgery. They don't want them slowing down her system anymore.

The plan right now is to give her IV antibiotics for the infection. Infectious Diseases(ID) have been called and they are going to come and talk to me about their plan for ABs. She will most likely get a PICC line (just like she got last year - which is like an IV so we can give her those strong meds from home). That means weekly dressing changes which totally sucks for her on top of all the pain she's been through. But I know that things could have been way worse, so I am counting our blessings.

Unfortunately, she will have to go back into the OR on Thursday for another irrigation and debridement procedure and cast change. So I really don't see us leaving before next week. I have no idea how long they will want that vac dressing (suctions out the goo from the wound) to stay and we clearly can't leave with that.

I will have to talk about this more later - but that doc we saw in Richmond on Saturday (along with his attending physician) is getting a letter from me along with the photo of her wound. He was deceptive in the way he communicated his title to me (called himself Ortho Chief instead of Ortho Chief Resident) which is very different. And I just found out he did the same thing to the Resident in DC on Saturday over the phone. So when the resident here in DC was talking to him he thought he was talking to someone with many more years of experience, so he went with his decision. There are so many things wrong there that I cannot leave it alone.

All in all, I think we will be here till next week for sure. Her wound has to start healing from the inside out, and the vac dressing has to be out before we can go home. I will be happy if we are home in time for Murphy's birthday on the 11th. I cannot believe he will be 7 years old! I really hope he and Cooper are doing okay. It must be unsettling (even if they don't show it) to see everything's fine in the morning only to get home and find Harlie and I gone for the next week or so. Sometimes I can't believe this is our life. It is so weird to feel so incredibly lucky and blessed but cursed at the same time.

Thank you for all your support. You might not know what to say - but just knowing we aren't forgotten makes a big difference in our spirits - my spirits especially.

Thanks,
Christy

Quick update

She's out of surgery and she did great. I am so so thankful. I was really very worried. I will give more details later - I am updating from the iPad and it is difficult to type a lot.

It has been super crazy. So busy that I haven't even been able to call my own mother! Sorry Mom! The cell phone reception was terrible until we got upstairs. And now it's too late to call.

They have a suction dressing on the wound now. And she has a new cast. It is very different. More on that later. But it now has a hole in the back for access to the wound. It is so gross. Seriously. Might post pics later. The incision is longer than I expected and she had to reopen most of it. It looks like we got to it before the infection got to the hardware (screws) so that is great.

I am so glad I brought her. More time could have made this a much different story.

She is trying to sleep now, but they are putting a foley in her because she hasn't peed and they want to know her fluid output.

I will try to get some sleep now. Heather had to drive back home. She made this a much more bearable experience for me. So thank you, Heather!

Thanks for all your support!
Christy

In Emergency Surgery

Very quick update... After talking with a few folks I decided to take her to the ER in DC. I didn't want to come alone (heavy traffic + trach + laying down child = a stressful drive) so I asked my friend Heather if she could possibly leave work and go with us. So she rescheduled a bunch of stuff and took the rest of the day off for me! I am so thankful for my support network!

We got to the ER around 3:30pm and we saw a buch of docs. An Ortho resident came to cut the back of her cast and a very long story short - she has a horrible infection at the top of the surgical site. I took a picture but I can't upload it right now. her surgeon came down and was shocked when she saw it.

So that meant she had to go into surgery ASAP. Luckily Brandy fed her lunch at noon and I didn't tube feed her after - so she was good as far as that went.

She cried when we entered the parking garage and she cried when all the scrubs showed up. She kept signing car. It was heartbreaking. Truly. What she has to endure kills me.

They took her back at 8:45pm and said it would be three hours. I will update more later as I can. It is very busy though - constant interruptions and millions of questions to answer. Going into unplanned surgery at night when the hospital is deserted is unsettling. heather is going to stay with me until we know she is okay. Thank you Heather!

Thanks!
christy

Heather and I haven't eaten

Weekend in review

Tom took Murphy camping with the cub scouts on Friday.  That left just me, Harlie and Cooper for the rest of the weekend.  I had our night nurse on Friday night, which allowed me to go to an exercise class on Saturday morning.  And it was HARD!  Oh boy am I sore!

A few hours later Harlie signed that she was itchy.  So, I took those long q-tips that you see at doctor's offices and put it down her cast like I normally do.  But when I pulled it out it was wet.  Like yucky wet.  I got a new one and fished around a bit, and pulled out some pink-tinged pus.  Oh, great.  That is not a good sign!

So, I called the ortho surgeon on call at the hospital (in DC).  I have to share some of our conversation... I gave him the quickest, most concise history I could to bring him up to speed.  When it was his turn to speak, he said, "First, I have to ask you, you're very medically knowledgeable, are you a physician?"  HA! I said, "No, I just went to the school of hard knocks.  I've been really busy the past five years."  chuckle, chuckle.

Anyway, he said that the drainage could be from skin irritation (of the severe kind, if you ask me!) or from an infection in the surgical site.  If it was skin irritation, they could try to modify the cast again and give antibiotics.  If it was an infection, she'd have to go back into the OR for them to clean the site.  You don't want an infection in your spine!  And he said that they might need to cut a window in the back of her cast to see the site to tell the difference.

And if it was a skin irritation, it could wait till after the weekend.  If it was an infection, she could get very sick, very fast.  So, we couldn't wait to see the doc during the week.

He said that there was no way he could tell me how serious it was over the phone.  Which left a decision - go to our local ER and have their ortho surgeon on call take a look at her, or drive her up to DC's ER where he would see her.  

Considering Tom was out of town and going to DC would be quite the commitment and I would have no idea how long I would be gone, I chose to go to our local ER.  Some negatives with doing that:

No surgeon wants to mess with another surgeon's patient.  Especially post-op.  

No ortho doc wants to mess with another doc's cast.  

So, some doc came down and looked at her.  It's his opinion that it is a pressure sore, and not an infection in the surgical site.  And here's why:

She's lost weight.  You can really see it now - she's super skinny.  And he said that the swelling is down, she's lost weight and she's moving and wiggling around in the cast.  Plus, her cast is really breaking down in some areas.  It was his opinion that she needs a new cast.  Three more weeks is a long time when you've already got skin breakdown.  And she is definitely in pain.  

He called the doc in DC and they spoke and agreed to send us home with the plan that we would be seen by her surgeon on Wednesday (she's out of town till then, as luck would have it - ugh).  We thought about getting a white blood count, but he was pretty confident and didn't want to put her through the torture of a blood stick.   

He told me what to look for in the meantime:

A fever

Loss of appetite/food tolerance

Reduction in activity/lethargic behavior

Overall sickness/not being herself

Now that we're back home and it's Sunday, I'm feeling a little less panicky and worried.  But, I left feeling a little annoyed.  I know that what he says is true.  For most kids.  But in our case, we have experienced a major infection with none of those signs.  So, I'm not very comforted with his words of confidence in my "mom secret powers" to just know if there's something serious brewing.

Here's why:

This is the post when I spoke about finding her past infection.

This is the post that summarized how bad the infection really was.

Some things noteworthy (in my opinion):

She had a raging infection in her face - at the surgical site - post-op NINE weeks!
She did not have a fever.
She was eating like she always does - fighting every bite and throwing up as usual.
She was not acting lethargic.
The only time she was bothered was when you actually messed with her face or mouth.
In four days' time the infection almost killed her.

The doc yesterday gave me some material to try to make the cast more comfortable.  I told him that we have not been able to get the tape to stick to the cast.  She keeps sliding down in the chair and the tape inevitably rolls up.  So, he gave me some magic tape that wouldn't do that.  Yeah, right.  I'll believe it when I see it.

So, last night I washed her hair and washed her up the best I could.  And then I turned her over my lap so I could work on her cast.  It is a mess back there!  She cried the whole time, protesting my efforts.  I did the best I could.  But I don't see it making much of a difference.  After I was done she kept signing "hurt" which is a first.  She's never offered up that sign.  She kept wiggling around trying to find a comfortable spot, crying and signing "hurt."  Ugh.  It killed me!  So, I gave her a dose of Tylenol with codeine and within the hour she seemed better and finally fell asleep close to 10pm.

I will call the office in DC tomorrow and see what I can get done.  I'm going to argue for them to - at the very least - cut a window in the back of the cast.  That would put all questions to rest and would take the pressure off the sore.

By the time her surgeon can look at the cast and get her in the OR to get a new cast put on, we'll be at least two weeks from getting it off anyway.  So, I think she's going to have to make the call if that two weeks is worth it or not.  Maybe we could just put her in the brace.  I don't know.  I just know that she can't go three more weeks the way things are.  Something's gotta change.

So, I guess I'll know more tomorrow when I can get a hold of someone.

**********

It is now Monday morning, and I left messages with everyone I could.  I'm not hopeful that I'll hear back today.  One complaint I have is that all the voice mails I get start off with "if this is an emergency, please call 911.  Or leave a message and your phone call will be returned in one to two business days".  What?  Certainly there are situations where calling 911 is not the answer - but waiting one to two business days isn't either.  Ridiculous.  I am really beginning to hate the orthopedic specialty.

I guess my other option is to just drive up there and go to the ER and then they would have to see us.  I don't know.

Anyway, just in case you were wondering - that magic tape?  Not magic.  Of course it didn't stick.  I find it hard to believe that they've ever used that tape and thought it worked.  I guess if you put it on your arm or leg where you're not laying on it all day, it would probably do better.

And - another note - she's really not tolerating her feeds very well.  She's throwing up during the feedings, which is very unusual for her now.  I hope that's just a coincidence.

Oh, and by the way - for all my local Richmonders - the pediatric ER at MCV is awesome!  It's brand new and completely renovated from the way it was.  You don't even have to walk outside - so if the area scares you in any way (which it's not scary at all) you don't have to worry about that.  You leave the parking lot elevator and walk right into the ER.  And each exam room is a ROOM - no curtained areas.  And it's big.  Lots of rooms.  Which translates into less waiting room waiting.  On Saturday there was no one in the waiting room and I got walked right back into a room and had docs in there in minutes - and it wasn't even a real emergency.

And need I mention that it's a pediatric ER?  The only one in the area, by the way?  Your kid is seen by pediatric doctors - who only deal in pediatrics.  Whereas if you go to another local hospital, your kid would wait with every adult, too, and be seen by the same doc that sees adults.

Oh, how different it would be for my family (and everyone who lives in this area) if we had a full-service children's hospital like every other city our size.  Yes, we are now the only city of our size that does NOT have a children's hospital.  So sad.  And embarrassing.  Think of the jobs!  Think of the houses that all those employees would have to buy and the shopping that they would have to do if they lived here!

I'll stop now.  It just makes me mad.

Okay, hopefully today will be productive.

Thanks!
Christy

Happy Birthday, Tom!

Thursday was a busy day.  First of all, it was Tom's birthday.  I feel so bad for him.  Every year, it seems, is a crummy time of year for his birthday.  It's Easter and his birthday that gets hit.  Here's the history:

2007 - Harlie's first Easter.  She spent March 6th to May 18th in the hospital for her 2nd heart surgery and recovery.

2008 - She had her nissen fundoplication surgery (a stomach wrap around the esophagus to stop vomiting) during this time period.  And we were gearing up for her first bone graft jaw reconstruction.

2009 - Her Fontan was scheduled for that time period, but she got pneumonia and was in the hospital in DC.  And a few weeks later, she had her 3rd heart surgery.

2010 - Was great!  That spring break was the week that we did something different Monday through Thursday (like going to the park, Busch Gardens, etc.).

2011 - Spinal fusion surgery - in a body cast.

I'm beginning to have a problem with Spring.  It's just not a good time of the year for our family.

So, I decided to take Harlie to her physical therapist on Thursday (remember Therapy Thursday?).  She loves to go and I thought that Traci could get her up and about more there than here at home.

And it worked!  She put her on a wedge thing (belly down) and she did push ups!  It was so cute!

And she even walked in the walker!  Traci put a belt around Harlie and held on to it from the back for support.

After PT, we saw her speech therapist.  Harlie wore her PMV for the session.  But, by the end of it, you could hear some struggled breathing.  It was wonderful to hear her saying words more clearly and loudly.  I didn't realize how long it's been since I've heard her "speak" while wearing her PMV.  But it hurt to hear her breathing at the end.  Just sitting back a little makes a big difference in her airway.  Total bummer.  I really thought there was more improvement.  I can't begin to tell you how incredibly disappointing that is.

But, at least she can tolerate it when she's upright.  So, that's something.  And certainly better than nothing.

So, after coming home from those appointments, Tom and I went out with some friends to celebrate his birthday.  We had a great time.  There is nothing like laughter to warm the soul.  So healing!!!

On Friday we had Harlie's Little Feet Meet.  I'll have to blog about that later.  Too tired tonight!

Thanks!
~Christy