Three Ring Circus

Went back for a check up this week. We flew in the day before and our angel Mark picked us up and took us out to a Mediterranean restaurant for lunch. We ate more chickpeas than I thought possible, and we loved it!
We spent the rest of the day walking around the medical plaza and Texas Children's Hospital, again in search of "the little doctor." She is a little person, neonatal doctor from TLC's "Little Couple." We couldn't find her. So we hung out in the ER. Nothing more exciting than sniffles, probably a little swine flu, here and there, so we went back to the ho-tel, mo-tel, Holiday Inn. We went out for dinner at 10 pm, stayed up til midnight, slept until 10. Ahhhhhhhhh.

Our doctor visit the next day was amazing. The waiting room is a smorgasbord of fixators! Lizzy is alive and well in Houston! Most everyone we have seen wears "the rack" on the lower leg. We have seen a couple on the femur, and none on the arm like Savy. Most have at least 4-5 rings, where Savy has just three. She has a baby compared to most we see. Naturally curious about blood, guts and gore, I strike up as many conversations as I can. We met a man today that has had his fixator on for one year, and he has one more year to go! His pin care alone takes his wife an hour a day. He was in a motorcycle accident and he saved his bleeding leg by using his own belt as a tourniquet. The scariest part for him, as he was laying bleeding in the road waiting for paramedics, red fire ants were all over the ground. It really puts things into perspective when you see people who are so much worse off than you. The people we see are in wheelchairs, they all tell a similar story of tremendous pain and misery. I'm not so sure our bright and shiny faces, and Savy's pain free arm, leave them feeling better after having talked with us though?
Sometimes, just to make them feel better, we lie and say hers hurts too. ;) winky face!

Here are some pictures I found of others who enjoy life with Lizzy. Even dogs!



This little boy had to wear a face fixator! So sad!

Life with Lizzy has been pretty uneventful. Once a day she has to suspend activities to tend to her pin sits, but otherwise, she goes on with life, with a smile on her face and no complaints. Even when people offer her sympathy, she just smiles and says "it's not so bad." She has learned how to sleep on her stomach, but it takes awhile to get into a comfortable position. Stomach sleep is what she misses most. Her sister has been keeping count of how many times she has been asked "what did you DO to yourself?" It's in the hundreds and climbing.

We finally got out the lobby to see the doctor. Then she had her x-rays, and (cue trumpet!) Dr. Guggenheim believes it should be able to come off in four more weeks! She will come back on October 15 for an xray or more likely a CT scan, and if all looks good, surgery the next day to remove the fixator!!!!!
This will be removed surgically, but this is an out patient procedure, and we will fly home on the third day.
Dr Guggenheim did mention that studies show that 14% of patients who have bone lengthening eventually break that limb, but kids have a bit lower percentile rate. Once they take the fixator off, the holes they drilled into and through her bone take four weeks to fill in. Then she is ready to put back on her soccer cleats!

Tight joints

I have been a bad, bad bogger. There just hasn't been a whole lot to update you on. We went to Houston on August 15. The good doctor said Savy is doing so well, that we could stop the lengthening portion. (No more knob turning three times a day) Now all we have to do is wait for the new bone to fill in.
Here is her latest xray:

She has gained just over two inches of new arm. The new bone looks like white cotton candy. We don't have to go back until mid September.

We had fun in Houston. We stayed at the Hilton again, compliments of Andee! We jumped on the beds, stayed up late and slept in. We always stop by the hosptial cafeteria and say hello to our friend Monique, who works in the kitchen. We also window shopped near Rice University.

Savy has been working out with Ryan at Spooner. He is a cute young man that motivates Savy into twisting and turning her arm and shoulders. She is getting a little tight in the elbow, but it's no wonder, with how the pins go right through the end of it. She is also training with her soccer team. She won't be able to play until she gets the fixator off, but that is just weeks away!

We went camping with Granny and Papa at the Grand Canyon!
Here is a picture of that:
As you can see, Savy always hides her arm in pictures. The arm is swollen, and has been since the fixator came to live on it. It will likely remain swollen for up to a year, according to Dr. Guggenheim. Some of the pin sites are tearing, which apparently is normal. As the bone grows, the skin stretches as best as it can, but tears result. Here is a picture:

We can always look into scar revisision in the future if the scars bother her. I think of them as battle wounds. She hasn't had any issue at all with infection. She does all of her pin care herself.

She showers every day, puts alcohol on each pin site. (No Joy, not vodka, RUBBING!) The alcohol stings and Stacy, Dr. Guggenheims nurse, says it is not a neccessary step, but Savy likes the smell. She is just like her mama! Then she smears neosporin around each site. They said she would develop a negative reaction to it at some point, but so far, so good! Then she caps each off with a fresh marshmellow. She takes calcium every day and I make her drink as much milk as she can stand.

We also got TWO new dogs! Actually, the aren't new, they are used, old dogs. They are 10 and 8 years old. We rescued them!

We call them Bear and Sham-Wow! (She also like to be called Shama-lama-ding-dong) We love our new (old) girls!

For all of you adoring fans

I just discovered that this bone lengthening procedure is nothing new. Rivers Cuomo from the band Weezer had it done to his leg. He was born with one leg shorter than the other. Here is a picture:

I also know that Zach Roloff had leg lengthening on both of his legs, but I think he had it done internally. Like a rod was put inside of the bones and it didn't involve anything on the outside. He complained about pain, and Savy doesn't really have any at all. She said it's sore first thing in the morning, but she only told me this when I asked her about it.

There are some health no-no's that Savy must avoid. She cannot smoke, because that will slow bone healing. She is really pissed about that one. :0)

She must also avoid all lakes, oceans, ponds or swimming pools that are the color of tea. (Or did he say "pee"?) He started getting all jacked up when he was telling us all of the risks associated with these bodies of water and basically yelled "Just don't go anywhere near them!" Okay doc, calm down. Jeez. If any of you are "savy" enough with photoshop, I would love to super-impose of picture of her jet skiing and send Dr. Gugenheim a picture. I know he would love to see how she is spending her summer!

That being said, Savy has gone to the waterpark twice with the fixator. She goes down all the slides they will let her on. There is one that refused her entrance. We need to call the ADA or someone to take on her case. Maybe Phillips & Associates. Anyhoo, sometimes her little marshmallows fall off and float around in the wave pool. If you find one, grab it for me. Those little suckers are expensive. Pools are okay because the chlorine kills any living organisms that may be floating around in the water.

Talking about $, I got our bill the other day. The total cost of her surgery was $64, 717.02. Through the miracle of insurance. our portion was $250.00

Here is the breakdown:

Private room for 5 days $5,300

Therapy $856

Drugs $5,099

Operating room $8,509

Xrays $627

Supplies $2,571

Recovery room $1,315

Anesthesia $3,434 (Haven't gotten the bill for that doctor yet!)

The remaining amount? The fixator! That thing cost more than $26,000. My dad could have built one for about $50.

I asked Dr G. if we could keep it, and he said we could if we wanted, but he has a colleague that is doing volunteer work in Africa, and he could really use it as spare parts. I think I will sell it on ebay and use the proceeds to buy Savy her first car.

Savy has also gone back to soccer. She did everything her team mates did, with the exception of actual game playing. I am afraid of the damage she could do to an opponent. She bangs the fixator on things all the time, but has not used it as weapon against her brother or sister. Yet.

Better, Stronger, Faster

Savy got her first ever set of fake fingernails this week. One hand only, so half the price! Leftie is way too sensitive for the filing, cutting and buffing that it would have to endure.

Also, she has learned how to whistle! I'm not sure yet if there is a connection between learning this new skill and the surgery, but I'm pretty sure!

We went to Houston on Tuesday for our first doctor visit. We flew there with Angel Flight. Our trip was delayed because of the wacko who called the Deer Valley Airport that morning to report he was going to kill a pilot. Luckily, it wasn't our pilot. Finally were on our way an hour late.

We were greeted by rainstorms coming into El Paso, and had to get permission to fly in Mexican airspace. That was scary and exciting, but considering that none of us had our passports on us, it's a good thing we didn't get shot down. I didn't know there was an actual "fence" on the boarder of Mexico. And it's not a wimpy chain-link fence either. On the same flight the pilot showed us an F-16 that flew by us. They said we probably screwed up their flight plan!

The second leg of the flight from El Paso to San Angelo was crazy. They took us up REALLY high, like 15,000 feet. Without oxygen, Savy and I both got the beginings of some serious air sickness. By the time we got on the third leg of the flight, I was thowing up. Luckily, I brought along a freezer strength ziplock bag. Then I had to hold a warm bag of vomit for two hours. But once again, all in all, it went really well. The people at the airports greet you the moment you get out the plane and treat you like royalty. Even when you are holding a bag of puke! Angel Flight is an amazing network.

Ok, so the doctor appointment went well. Here is a picture of Savy's innerds.

The break is now about 8 mm's and you can even see some bone growing in in the shady area between the break. You can also see the rods that go into the shoulder. Once we got over the intial shock of seeing that, it's pretty cool. We got copies of the xrays and showed them to everyone who asked about her. There is one on the fridge right now.

The good doctor said all is fine and on track. To accomodate HIS VACATION SCHEDULE, he wanted us to travel back to Houston in one and a half weeks. Really? Seriously? That probably won't happen and we will go back when he is done with his holiday. Don't you think with all that my insurance is paying him, he could make at least one trip TO US? Or at least let us stay at his house when we come? Really!

Give me a damn vicodin!

Okay. We are one and a half weeks out from surgery. This is how I was greeted this morning. She is easing off the pain meds though, and that is good. I had her on a schedule of giving her a vicodin every four hours until Sage asked her "Are you in pain?" and Savy said "No." So Sage asked me, "then why are you giving her vicodin?" Lessons from a 15 year old know-it-all. Stopped the vicodin schedule and now just give it to her before bed, when she wakes up, and if she asks for it . Time to ease off the smack.

I find it hilarious that doctors measure pain based on this silly one to ten scale of unhappy faces. Savy was a 9 when she first got out of surgery, then was consistantly between 4-5 during her hosptial stay. I would say now she is usually at 1-2. Mostly just uncomfortable and angry that she is not sleeping on her stomach.

HOUSE OF PAIN!

Pins at the elbow......... ..........Rods at the shoulder..................

These are the little sponges, or "marshmellows" as we like to call them. It's really an ilizarov sponge. It has a slit up the side that allows us to wrap it around the pin or rod. The hospital gave me a box of them, and I am cutting them in half to make them last, but I am told that they cost around $500 a box and that insurance won't likely cover them. She will probably need a couple of boxes at least over then next 6 months. The doctor told us that cosmetic sponges work eaually as well. I'm thinking that real marshmellows would work too, and provide a tasty snack. The pastel marshmellows would look great to coordinate with outfits. We will have to be careful around dogs and ants though.

Home Sweet Hotel

Finally discharged on June 9. I was a little nervous about doing the whole recovery thing alone, without the helpful nurses. This is me, trying to catch some shuteye:

We stayed at the Hilton Medical Plaza until we left for Phoenix, from June 9- 12, courtesy of Miss Oleno!!! XOXOXOXO

Here are some pictures of our Home Away from Hospital:

We stayed close to the hotel for the first couple of days, but we did venture out for meals. We met "Big Rodney" who is a homeless man who hangs around the medical center. Really nice man! Next time we go, we will get a picture with him. We also walked around Texas Children's Hospital looking for Dr. Jen from TLC's "Little Couple." We never did find her.

We were scheduled to go home on Thursday, June 11, again thanks to Angel Flight. However, one of their rules is that the patient has to be able to step up onto the wing of the plane, and hunch over in order to get into the back seat. Savy's pain level was too great for this, and who can lift a 13 year old girl with 10 lbs of metal attached to her arm? Thanks to Paula F and her husband for getting us buddy passes to fly home on Southwest! We weren't able to get onto any flights on Friday, so we had to go to the airport hilton for the night.

I can't believe that Hilton would put their name on the hotel we stayed at. I'll just leave it at that. Our luggage had been sent on to Phoenix, so we had to sleep in our clothes. It was like camping, but in a really dangerous naeighborhood! Another great adventure!

Visitation

Thank God Sage and Pat came. Sage and Savy fought a lot and several times Savy had to ask them to go back to their hotel, but all in all, it was a huge relief to have them there.

Sage and Pat left one day to give Savy and break and to do some shopping. Sage brought back this bracelet for her sissy:

Granny and Papa sent flowers! Thanks Andee for sending us off with incredible care packages. You guys are great! <3

We enjoyed our daily visits from Yari, the physical therapist who made Savy feel oh so good! She also made her two custom splints to put her wrist and hand in a more neutral position.

Not Quite a Medieval Torture Device, But Close

The food was pretty good. The "food & nutrition" people always announced themselves that way when they entered the room. Isn't that redundant? Like if the housekeepers entered the room and said "housekeeping & cleaning." Whatev.

Believe it or not, this was my first bite of alphabet soup. And we are in Texas! Whoa.

SWEET JESUS MY ARM IS BROKEN

We arrived at the hospital at 6:45 on Friday morning. The lobby was already full of people having surgery that day. We were at the Texas Orthopedic hospital. It is owned by the doctors who work there. I think that is a good thing. We didn't have to wait long before we were shuffled back into the pre-surgery room.

Savy was tagged with her arm bracelets and the "sleep doctor" came to meet us. She was a girl doctor, can't remember her name, but she has a 13 year old at home and she was great about helping Savy stay calm. It was our hope that they would not give her an iv until she was asleep, but as her anxiety rose, so did the need for a pre-surgery "cocktail." The insertion did not hurt her at all an within two minutes she had stopped the tears, and was smiley and giggly.

The first picture shows where Dr Gugenheim autographed her arm and wrote a big "yes" so he didn't accidently operate on the other arm. Jeesh.

So I sat in the waiting room, with no cell phone (I left my charger in Phoenix) completely cut off from civilization. Excpet for all the others in the waiting room. I did meet a really nice family from Austin who had a little boy that was getting surgery with Dr Gugenheim, right after Savy. I love Texas accents.


Two and a half hours later, Savy was in her room. We were lucky to have a private room. I guess old people who are in for hip replacement surgery don't like whiney kids in the same room. Good for us! They had her all set up with a pain pump that only she was allowed to push. It gave her dilauded whenver she wanted it. She could push the button all she wanted, and believe me, she was pushing it every four minutes for the first couple of hours. When the machine dispensed the meds, it sounded like a little old man snoring.


Nurses are an interesting bunch. Some are incredibly nice, kind, understanding and giving. Some apparently hate humankind. Night nurses appear to uniformly fall into the latter group. Aside from coming into your room the minute you've managed to fall asleep to take your blood pressure or temperature, nothing else seems to really warrant a trip to your room. God forbid should you ask any old nurse at the nurses station for help. You must call YOUR nurse, it's not my job.

A very kind nurse did bring Savy two popsicles which she ate right away. They also hustled her in a lunch tray of a chicken sandwich and pecan pie. Gross.

And here is the fixator, in all its glory:

The Journey Begins

We left for Houston on June 3, 2009. We were flown there by an amazing organization called Angel Flight. They provide air transportation for people in need of medical treatment. It's a group of pilots (or angels) that fly their own planes, on their own time. Please, if any of you are looking for an agency to donate your unused money to, this is the one!

It took us three flights to get to Houston. One from Deer Valley airport to El Paso, one from El Paso to San Angelo, and the last leg from San Angelo to Houston. So all in all, it took us nine hours to get to Houston. But! We did not have to go through the whole security process at Sky Harbour. I thought this would be most helpful on our way back.

If you have never flown on a little airplane, you must try it. I believe we were on the same type of plane that JFK Jr. met his maker in. :0) Our trip was uneventful though. I do need to find some new air sickness medication.....

Little planes are loud so we had to wear headphones in order to talk. Here is a picture of Savy:

No, the windows were not down, we were on taxying (is that a word?) on the runway.

Back to the Begining

The story of "lefty" began in June 2000. (Savy was 4 1/2 years old.) Savy was in a car being driven by her father, with her brother and sister in the backseat. There is much "debate" over whether or not she was in a car seat, as the law requires. Anyhoo, her dad ends up crashing into a Suburban while driving 40 mph. Savannah fell to the floor of the car, with her neck hitting the floorboard.

My first thought when I saw her was "Oh thank GOD she is okay." We took her to the closest ER, who then transported her by ambulance to a childrens' hosptial. We learned she had bruised her heart, badly, and now had a heart mumur. As far as her arm went, we were told she may have a broken collar bone. (Jeez! I WISH that was all it was) We spent three days in intensive care, prayin', prayin', prayin'. Her little arm wouldn't move a bit

The best local neurosurgeon told us she had a brachial plexus injury, but that within three months, she would get all movement back. Yeah, right.

So we loaded her up and took her to Dr. Nath in Houston. She had the first of a couple of surgeries there. She also headed north to Montreal Canada for a surgery that involved placing two muscle simulators in her back that had electrodes that ran down her arm, providing stimulus to the muscle every 4 seconds. Unfortunately, she got an infection four months later and they had to be removed.

So, long story short, years and years go by, and now she is 13 years old. She is absolutely beautiful, smart and talented. As far as her arm, well, she can bend the elbow to enable her to sandwich items she is carrying between the arm and body, but that is about it. Lefty is also about 2 1/2 inches shorter than her right arm. That's what brought us to Dr. Gugenheim in Houston Texas.


WE CAN REBUILD HER. WE HAVE THE TECHNOLOGY.

Bone lengthening is not really bone lengthening so much as it is bone growing. Here is how it works:

The bone (in Savy's case, her right humerus) is surgically broken into two segments, and the Ilizarov fiaxator "Lizzy" is put in place. Then the two ends of the bone are gradually moved apart slowly enough so that new bone can form (or grow) in the gap. At the same time, all the soft tissues and stuff surrounding the bone expands too. The result is a longer arm (or leg, or toe, or middle finger)

This is all done using an external fixator to create tension stress. This Russian dude named Gavril Ilizarov came up with this technique, so they named the fixator after him.

This is obviously a leg, not an arm, but the process is the same. We will be turning three knobs three times a day, which is what will pull the bone apart. The fixator will be attached to her arm by three rods attached to the top of the arm and three pins that go straight through the bottom of the bone, right above the elbow. Ouch.


Here is a picture of a different kind of fixator. We didn't choose this one because the ilizarov is much more gentle that this monolateral fixator:






One of the biggest elements of the process will be pin site care. The most common complication of limb lengthening is pin site infections. We will have to clean the sites very carefully everyday in order not to get infections. If she does get an infection, she will have to take antibiotics (and you know how I feel about those, don't you Dena?) If the infection gets bad, and travels to the bone, it will be time to get serious.



Along with all of these worries, we have to go to Houston every two weeks for check ups and x-rays. This will be for the first two and a half months during the "lengthening phase." More on that later. This is enough to make your mind spin or your stomach to vomit, so now I will leave you with a picture of.......

P.J. after a pedicure!

The First Post

The purpose of this blog is to chronicle Savy's arm lengthening surgery and all the good that will follow. I figured this would be a good way to keep friends and family informed of all of the goings on.



So, for the next several months (and I mean several, as in 6 or 7 months) I'll report here on the in's and outs of her arm lengthenig process. I'll even include all of the gory details and pictures! (Not for the faint of heart!)



But for now, here is a picture of Montel Carl (named after his grandpa Tony) aka "Monkey"




Oh! And here is a picture of Savy, doing what she does best!