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!