Fixator Removal Over!!

Annie did GREAT today!!  This is surgery number 7 for her, but the first time she didn't have to stay inpatient.  What a difference.  And best of all?  She does not seem to be in any pain (knock on wood).  She was super, super grumpy for a few hours post-op, but has been pretty delightful all afternoon.  PRAISE!!!

Hoping for a restful night for her and more of the same tomorrow.

For those that have asked....here is a picture blitz......even though I cannot get her to smile for the camera, much less look at it these days!  We decided to stay ocean front for her final (for awhile) surgery.  Great idea!

Annie's first trip to the beach....she seemed to love it!

Mommy and Annie

All this beach going has tuckered me out!

6 am this morning waiting for surgery...."I want a snack" she said and furrowed her brow

WOW.....straight arm (In the process of having her splint made)

Left arm pin sites....they look pretty good

First words she managed to say upon waking up?  Where's Gee Gee?  Ask and she shall receive!

It's been a long day....let's go back to the hotel and put pj's on!

Buh bye fixators!

Annie gets her fixators removed tomorrow!  So excited for her!  Prayers for a quick, complication free surgery in the morning.  Oh, and let's add minimal pain!  We are back in West Palm but can hopefully go home Thursday as planned!

We took Annie to the beach this afternoon and she had a blast!  Future beach bum.

X-Rays

I am not a radiologist, but her left radius does not look good.  Is seems to be very crooked and not completely healed.  Her right looks really straight (I'm guessing that is a good thing?).  I will FedEx to Dr P today, so hopefully we will know something in a few days.

Healing In Progress!

The good news is that Annie’s bones have almost healed.  The bad news is that we cannot schedule a fixator removal date until her bones are completely healed.  That means we have had to wait another month, repeat the x-rays, then schedule a surgery date (assuming she is completely healed).  It makes sense, it’s just  that this whole process is far more drawn out than we were originally thinking.  What we thought was going to be a 2-month fixator hell is turning into more of a 4-month fixator hell.  In the grand scheme of life it is no time at all, but in the here and now, it is dragging by painstakingly slow.  I am just so thankful that she is too young to remember any of it!! 

When I was preggers we used to refer to her as BGT…as in baby girl trouble.  She definitely continues to live up to her name.  Would you believe that stinker actually choked, aspirated on her vomit, and ended up with aspiration pneumonia?  I didn’t even know such a thing existed, but leave it up to BGT to school us about it!  The choking incident happened while we were in the car and she panicked, tilted her head back, and pretty much gargled on her throw up.  Some obviously made its way to her lungs, thus causing the pneumonia.  Crazy I tell you!  She had to be put on clindamycin (an antibiotic used to treat “serious” infections) and have breathing treatments 4 times a day for days (have I mentioned how much I hate Xopenex?  MAKES. KIDS. WILD!!!!!!).  

Here’s the silver lining……Annie is the happiest she has been since before her surgery.  I mean downright happy!!  It makes me wonder if her little body was working overtime trying to fight off infection from her fixators and previous 2 infections and she just didn’t feel good.  10 days of antibiotic later, blissfully happy!!  It warms my heart to see her little personality back in full force! So, we go for x-rays on Monday and PRAY that she is all healed up and we can schedule an off date.  Dr P is out of the country the last 2 weeks in June, and his schedule is of course full the first 2 weeks, so I am not sure what the plan will be.  All I know is that if they are ready to come out, come hell or high water, those things are coming out! 

Alexander has somewhat turned a corner with his behavior lately, thank goodness.  I was starting to think we were going to have to ship him off to Military preschool or something (just kidding of course….I can’t stand being away from him for more than one night).  He is still jealous as all get out, but he is keeping it better under control (knock on wood).

The lights of my life......

Future helicopter pilot perhaps?

Annie and her wagon date Grady :-)

X-Rays

For you, Mom:

I'm no radiologist, but bone looks to be growing where it should....can't wait to get the official word from Dr. P and hopefully schedule a surgery date to get those damn fixators removed!!!

Update

Overall Annie’s appointment with Dr. P this week went very well (even though we had to wait close to 4 hours for a less than 5 min appointment).  We are so excited that she has completed the distraction (lengthening) phase and has moved on to the consolidation (hardening) phase!!  I am hopeful that her pain will lessen drastically now that her bones are no longer being pulled apart.  I was thinking that she would be able to have the fixators removed a month after the lengthening was complete, but it turns out it will be 2 months.  Damn!    

Her latest infection has cleared and she is no longer required to wear the thumb immobilization splints, or splints of any kind right now.  She is actually quite fond of her splints (I think it is a sense of comfort for her) and she cries when we take them off (we put them on for sleeping as a sense of security for her).  She has literally worn some form of splint since she was 2 days old, so I could see why she might feel a bit naked without them!

It was very disheartening to hear that she would have the fixators at least 8 more weeks.  That means 8 more weeks of pin site cleaning (aka daily torture).  Boo, hiss, I don’t wanna……

She has gained about 15 mm in length on each radius.  Pretty amazing if you ask me!  Her arms and hands are very stiff but that is expected from being immobilized for 6 weeks.    As she gets more and more comfortable with being splint free she is using her hands more.  Unfortunately she has lost all of her thumb function, but now that her hands are free I am hopeful that she will regain all that she had a more (the muscle transfer is supposed to increase opposition).  I still have that twinge of, oh hell, why did I let him mess with her thumbs again.  She was doing so great….why rock the boat for more when you could end up drowning, you know?  Of course, on the other hand (pardon the pun), let’s rock that boat and see how far she swims.  I think she will amaze us all!  Yep, that’s what I’m going with for now!

Until today, Alexander had a terrific week, despite Annie, Mommy, and Gee being in FL for part of it.  He got sent to the “principals” office today for hitting…….really?.......I think I need a drink!

Annie and Gee on the veranda waiting to see Dr P:

Left arm x-ray 4/1:

 Right arm x-ray 4/1:

So tired she can't even sit up straight (I know the feeling)....

Alexander........

Silly boy:

Growing!

In a 3  week period Annie's arms grew 10 mm (also known as 1 cm)!!!  Truly amazing!  We made a quick trip to FL on 3/18  to see Dr. P.  He was very pleased with her progress and told us to come back in 2 weeks.  I am really hopeful that when we see him this coming Monday he tells us that she is done lengthening, can start OT to regain her thumb movement, and schedules a surgery date to remove the fixators.  Think that is asking too much?  Nah!  Oh wait, I forgot one, hopefully she will also be infection free by then!

We are starting to see more and more glimpses of our happy little girl again, but we still have a lot of rough moments each day.  The worst of which comes when we have to clean her pin sites and change the bandages.  She literally screams blood curdling screams throughout the whole process.  Even though I know a lot of it comes from sheer anxiety over the process (can you blame her?) a lot of it also comes from pain.  A big thank you to my wonderful friends that came over and relieved me of the duty one night!  It is a necessary evil, but I hate, hate, HATE doing it.  Not for me, but for her.  Makes me question our decision on a daily basis. 

She is fighting infection #2, which I am sure adds to her discomfort.  The main source of the infection this time is due to her skin tearing against one of the pin sites (OUCH), as well as a stitch not dissolving as it should have.  Yes folks, I learned how to remove sutures this past week.  Good thing I swiped that suture removal kit from the exam room....somehow I knew we would be needing it!

Alex struggles with jealousy, which equates to really poor behavior at times, but he is still a really happy little guy!  He keeps us laughing!

Picture Time:

Here is the x-ray of her right arm where you can see the fixator screwed into the radius and can see the rod that was put through the ulna.  No wonder she has been in pain:

X-ray of both arms:

Look how straight her right arm is looking:

Underside of her right arm....looks amazing!

You can see where her poor skin is tearing:

Caught her smiling in the bath:

Home Bound!

We survived our trip to Dallas and are on the way home.  Unfortunately Annie has had a rough couple of days and has not been a very happy camper.  I am pretty sure she is working on an infection, as she ran a fever yesterday, her pin sites are looking redder, and one is oozing a bit (gross, right?).  Anyway, with the help of our favorite Dr. we decided to start her on antibiotics last night, so hopefully we caught it early.  

I am not sure why she is so very fussy again, but I suspect she is tired and just doesn't feel good.  Hopefully getting home and back in a routine will help her.

Alexander has had big fun in big D!  He is going to have a hard time getting back into his routine when we get home.  Both kids are a little on the spoiled side at the moment, but hey, you do what you have to do to get by sometimes!

Silly girl:

 

What a Difference a Day Makes....Not in a Good Way

Annie had a pretty rough day today in terms of pain.   We are trying to figure out the right balance of giving her pain medicine vs. regular Tylenol, but don't have that nailed down yet.  Hopefully tomorrow will bring better pain management!

She screamed bloody murder tonight when I had to change her bandages and clean her pin sites.  It was really hard not to break down and cry right along with her.  It seems to be really painful for her, but it has to be done to try to reduce the chance of infection, which is apparently very high.  Sucks.  BIG time!

The good news for the day is that we get to leave FL as planned on Saturday.  We are flying to Dallas as are Stephen and Alexander.  I can't wait to see my little guy (the big guy too) in person!!!   My heart really aches being away from him for so long.  I am sure it is much harder on me than it has been on him, but I can't wait to wrap my arms around him, kiss on him, hug him, and tickle him!

Um, could you stop taking pictures and get this over with:

Left arm up close and personal:

Right arm up close and personal:

Major Improvement!

Today is the day I have been waiting for.....my happy little Annie is back!  She has finally caught up on her sleep, is in far less pain, and is making great improvements!!!  She went the better part of the day on Tylenol only, which is awesome at this point.  She is still on Valium (for muscle spasms-since she had muscle work done) but that is only 2 times a day.  I love seeing her funny little personality reemerging....totally warms my heart.

I started turning her fixators on Monday, which was very scary at first, but is not necessarily a big deal now.  They have to be turned 2 times a day and the dressing around them changed once a day (you can imagine how much she loves that).

I can't believe it actually happened, but I "lost" the wrench to turn the fixators on the first day.  I searched endlessly and cried buckets of tears until Annie looked at me at one point and said, "Don't cry mommy."  Ummmm, okay, you are right.  While I was so upset with myself I realized that there was nothing I could do about it except beg for a new one the next day, so that is what I did.  Of course, I brought the man that could get me a new one a generous Starbucks gift card, but I am not beneath bribing who I need to bribe to get what I need for the Princess :-)  Stress that I did not need.

Anyway, she had her splints adjusted once again yesterday, but I think we are finally good to go.  Lots of other details to tell, but too tired to tell them so they will have to wait.

Thank you for all of the prayers...they definitely have been answered!

Ahhhh....bandages and splints off for a few mins...

Incision on the side of her hand (for muscle transfer):

Underside of hand:

Getting splints adjusted again...she is so over it!

Rough Seas

I can sum things up in two words.  This sucks!  Actually, let's expand that to three, this REALLY sucks!   Poor Annie has been in a lot of pain and extremely agitated.  

I wasn't expecting a cake walk for her, but I wasn't anticipating it to be this bad either.  I thought for sure that this (a supposedly mere 3 hour procedure.....HA!) would not be nearly as rough as any of the others, but this is turning out to be the worst (outside of her OHS, of course).   

We spent the better part of the day yesterday chasing her pain and trying to make her comfortable, both of which seemed to be loosing battles.  Even when I was the one holding her she would just cry, "Mommy, Mommy, Mommy."  Heart breaking!  Unfortunately they had to come re-do her dressings and adjust her splints, which was very, very traumatic for her (and the rest of us too).  At that point the nurse relented and drugged her up.

By 4 pm they had given her so many drugs she was high as a kite and her pain was under control.  That's not necessarily a good thing either though (the high as a kite part), although it did provide us with some much needed comic relief.  Anyway, we finally got to move out of the PICU to a regular room last night around 5.

This morning she got her dressings changed again, drain tubes removed (OUCH), and orders written for discharge....YaHoo!!!!  She is still very irritable (who wouldn't be) but I do think her pain is under control.  Hopefully we will see big improvements as soon as we vacate this joint!  The staff here is amazing, but there is not a comfortable thing about this hospital.  Guess we are spoiled with Vandy Children's!

Back on the home front Alexander is have an absolute BALL with his aunties!  It is so very hard to be away from him but I am comforted knowing that he is having so much fun.

She was in the process of the dressing change and splint adjustment:

Right arm without dressing....

Watching Caillou with Gee early this morning:

Very long day, but doing well!

Surgery took a lot longer than we expected (6+ hours) and right out of surgery she really struggled, but she is doing remarkably well at the moment (knock on wood).  I got a quick peek at her arms before they had to wrap them up (to keep her from poking her eyes out with her fixators).  A little intimidating I must admit. Here is the laundry list of what she ended up having done:

Right arm:

• Ulna broken and a rod placed in it to straighten it out (it was very bowed)
• Radius broken and external fixator attached
• Huber Procedure- muscle transfer to aid in thumb opposition
• Tendon repair- apparently an important tendon was not connected

Left arm:

• Radius broken and external fixator attached
• Huber Procedure

Her pain is being well managed now as is her breathing.  Hopefully that will be the theme of the night! I talked the nurse into letting my mom stay with us tonight so we will take turns holding her.  It is definitely a two man job to move her with all of her cords....2 drains, 2 IVs, heart monitor, pulse ox, blood pressure cuff, and catheter.

Right now she is laying on Gee, eating crackers and watching Calliou.  It's nice to see her awake and not crying in pain.

Thank you for all of the continued prayers and well wishes.  They have really helped me through the day! :-) 

Resting peacefully on daddy:

 

Is it Over Yet?

We made it to FL unscathed, albeit exhausted.  We spent many an hour at the hospital and clinic today going through the pre-op ritual, which always entails a lot of waiting, a lot of questions, and a lot of crying (mostly from Annie, but um, pass the tissues).

She was actually a champ for the better part of the day, charming passer-byers with her smile and zest for life.  It was only after they started digging around in her vein (seriously) trying to get blood.  The nurse tried to tell me that she was crying because she was being restrained, not because it was hurting.  Are you kidding me?  Anyway, she finally passed out on me from sheer exhaustion and took a power nap which got her through the rest of the long day in a really good mood.

We are staying at a house that is similar to the Ronald McDonald House,  so we are surrounded by fellow patients of Dr. Paley's, which is wonderful.  I am amazed at what some of these kids have gone through, yet seem so full of life and resilience.  All of the other kids here (there are 9 other families) have lower extremity issues, most of which are profound.  You would not believe how these kids can still run around like everything is fine.  They have been to hell and back with surgery after surgery and endless hours of daily, painful therapy.  It's very humbling.  Truly it is.   And amazing.  These are some of the most beautiful children I have ever met.

We didn't realize that Annie would also be having a muscle transfer done on each thumb to finish out the pollicization process.  We knew she *might* have to have that done, but I suppose we just kind of forgot about it since her thumb use is so awesome.  Anyway, Dr. Paley explained how much additional function it should add, so it makes sense to have it done while he is already in there.  She will be under for about 4 very long hours tomorrow.  Glad she is up first!

Thanks for the continued prayers and well wishes....they really mean a lot and keep me going!

XOXO,
J

Ready, set, go!!!

We have been blessed with yet another miracle!  Our insurance has been reinstated (LONG story not worth telling) and Anastasia’s surgery has been approved!  Now all we have to do is go on quarantine to keep her well the next 9 days (well, actually the next couple of months would be nice, but I suppose I should not be too greedy!).    

Alexander is super jealous that Annie gets to stay home from school and has decided that pooping in his pants is a really good idea and a way to show us!  I understand that it is probably the only thing he feels he has control over, but I am so over poop!  I never knew I would get to a point where talking about poop is as common place as talking about the weather or what’s for dinner.  We had a conference with his teachers the other day and they told us one day he ran out of the bathroom and declared, “I pooped in the potty.  It was brown and green and REALLY big”.  Yep, that’s my kid!  We are trying to praise him a lot when he chooses to go in the potty (because it is definitely a choice for him!) so we called Aunt Katie last night from the car to tell her about his great pooping day.  I say, “Alexander, tell Aunt Katie where you pooped today”, and he said in a really excited voice, “I pooped in the potty”.  Aunt Katie promptly threw him a virtual parade for his accomplishment, at which point Annie spoke up and said in an excited voice, “I poop in my pants”.  How do you not just laugh!

At least poop stories (not the cleaning up part) make me laugh.  I am trying really hard not to think a lot about it, but when I do I get really nervous about next week.  I know in the long run it will be well worth it for her, but the whole process just sucks for her.  She cried non-stop for about 12 hours straight after her last surgery because she was in so much pain and so unhappy.  Valium and pain meds didn't work at all for her.  She was so miserable.  Granted, that was a much more complex and lengthy procedure, but it’s hard not to think about her pitiful little face that said please do something to help me. 

The good news is that she is a trooper and nothing keeps her down for long, so I know she will prevail!  Just wish she didn't always have to be tested though! 

Surgery Scheduled!

The May house is gearing up for another big surgery for Annie (hopefully) on Feb 21^st in FL.  Two big this have to happen first.  One, we have to keep her well, and two, the insurance needs to be convinced that the surgery is medically necessary (they are not convinced yet).  We have pulled her out of school and have her home with a nanny, so hopefully that will help in the health arena.  As for the insurance, well, not much I can do.  Hopefully the Dr’s office can work their magic and give them what they need.  I work for a new company (we were sold), so we have new insurance; therefore they do not have her full history yet.  I have to say that our last insurance was AWESOME and never questioned anything.  Being in this situation really frustrates the hell out of me!    

The surgery she is scheduled for is to lengthen the radius on both arms, which should significantly improve her function.  If you want to read about the lengthening process, feel free to visit Dr Paley’s website http://paleyinstitute.org/?q=intro-to-limb-lengthening.  While I dread it for her (and all of us for that matter) we are hopeful that this will be it for surgeries for many years to come!

Annie and I leave for FL on the 19^th, my mom will meet us there on the 19^th, and then Stephen will come the 20-23.  Alex will be staying home this time, which will be really hard on me to be away from him, but will be much better for him.  She has to stay in FL for a week, and then we will go to Dallas for a few days (I have a work meeting that I cannot miss) and then we will finally get to return to Nashville on March 7^th.

Start the prayers now!! J

We had a really pretty snow on Saturday morning and the kids had a blast playing in it!