Thursday, March 25, 2010

Straightening Things Out - Trace's Legs, That Is!

Wow, I can't believe it has been a week since Trace's surgery. As lots of kids with achondroplasia have to have their legs straightened, I'm going to give more information, and not sugarcoat it. Hopefully it will help someone else prepare.

We had all been putting a tough face on leading up to "the big day". On Monday afternoon, we had the car loaded up and went to leave. Trace walked past his John Deere ride-on, and climbed on. We said it was time to go, and Trace sat there, his head down, gripping the steering wheel. His little lip was out and silent tears were dripping off his cheeks. Our tough guy was scared and sad. John and I both completely lost it. We let T make a few laps around the house while we pulled ourselves back together, then headed out.

Tuesday was a super fun day of pre-op appointments. First we saw Dr. Ain, whom Trace would not even acknowledge, and got the typical pre-surgery statistics and such. We were relieved to hear that the likelihood of recurrence was very low. A few x-rays later, and we were off to the anesthesia consult. They wanted C-spine x-rays, so upstairs we went. Then it was off to the lab for blood work. Trace was super tough, didn't even flinch when they stuck the needle in and watched the blood fill up three tubes. The way he internalizes things and puts on a tough/brave face is amazing, yet scary - I'm glad that he is tough, but worry about things hurting him physically or emotionally and him not telling anyone about it. We were hoping to go to Port Discovery Tuesday afternoon, but since we spent from 8am - 2:30 at the hospital, and Trace was in desperate need of a nap, we didn't make it. We did take advantage of the beautiful weather to head over to the Inner Harbor for dinner and some fresh air.

Here's T-bird's before picture (I know that at least a handful of ya are making pinching motions at the monitor, it's okay, I can't pass up pinching that little bum either):


Trace's surgery was scheduled to start at 11:15, but they were running behind on the surgery before him, so we got to spend a fun-filled morning in pre-op. Luckily, Trace doesn't go anywhere without a backpack full of tractors. My mom is a nurse anesthetist, so she volunteered to go back to the operating room with him until he went to sleep. We moved over to the surgery waiting room and after mom joined us, we went for some lunch. Dr. Ain does an arthrogram (xrays of hip-foot after contrast dye is injected in the joints) and maps out the problem area and the angles needed to correct it - thus the low recurrence rate. So, after all the standard surgery prep stuff - putting T to sleep, IV, catheter, arthrogram, etc., they called out at 12:55 to say they made the first incisions. We were super suprised when at 2:40, instead of just an update on progress, they said they were finishing up and he would be all done within the hour.

Pre-op play, and Grandma putting Buzz to sleep:


A little while later, Dr. Ain appeared and said everything went very well and that he was happy with the surgery. His residents came out a little later and gave similar updates, adding that his casts are really cool. We couldn't wait to get into the recovery room to see our little guy. He was really ouchy, but the recovery room nurses were great about giving him Delotid and Valium for pain control. Trace's legs were fixed with two screws per leg, plus casts from toe to top of thigh - no external fixators or anything like that. He also has a bar between his ankles, fixing his legs at about 12" apart(measured from the outside of the feet) - which we were not expecting. Because his legs are only held together with screws, with no plates or rods, the casts are supposed to be on for 8 weeks and there is supposed to be ABSOLUTELY NO weight bearing. The screws will be removed in about a year.

Wednesday evening after getting settled into our room (and the awesome camo casts):


While we were hanging out at the hospital my mom took Trace's shorts and underwear that I had brought for him and sewed snaps in either the crotch (we then put them down over his head and snap around the crotch) or on the sides (put on kinda like a diaper). Like I said, we were unprepared for the bar between his legs, but it does make moving him much easier, and I cannot imagine the stress on his hips if they were not connected. We also rigged up an interesting tube system for him to use as a urinal, since the standard urinal would not fit with the bar. A toilet reducer seat is a must for at home, as those casts are slick!

Wednesday night, Trace was "ouchy", but drinking well. He was on a constant Delotid pump (with some other medicine mixed in to combat itchiness), with a button for extra dosage, if needed (and it was needed). He also got Valium every 4 hours to help control the muscle spasms and help him relax. He was pretty whiny, and obviously in pain, and also very very upset that he was "stuck". He kept saying "My legs are stuck", "I'm stuck", etc. - which was horribly heart wrenching. As much as we discussed the surgery and the casts, it was a tough realization for him that he COULD NOT move his legs.

John stayed with Trace Wednesday night, and my mom and I went back to the Believe in Tomorrow Children's House for a night's rest. Thursday, Trace refused to drink or eat and was still in a good bit of pain. The nurses we had were absolutely wonderful, taking lots of time with us and trying to make Trace as comfortable as possible. John headed home Thursday afternoon to be with Taylor. On Thursday Trace has graduated from crying about being "stuck" to wanting the casts off - a small step in acceptance.

After mom arrived at the hospital Friday morning, I went over to the Children's House to shower and rest. When I returned a couple hours later, Trace was sitting in the chair and had drank some and ate a few goldfish! Our excitement was short lived, as he refused to eat the rest of the day. They did cut his IV fluids down, which got him drinking more on his own. We had a big chicken/egg thing going on with food - the Delotid slows down the stomach, killing Trace's appetite, but until he ate a little, they couldn't switch him over to oral Oxycodone. Finally at like 6:30 Friday evening he ate a few bites of mashed potatoes and we started the medication switch - oral Oxycodone, with the Delotid button as a backup as needed. Friday evening he was playing and much better, which was a huge relief. He had also given up on the whole "take these casts off now" thing and pretty much accepted them.

The first 48 hours were pretty much pure hell for all of us, especially for Trace, I'm sure. It started getting better after that.




Saturday morning we saw Dr. Ain and he said we could get out of there - by the time everything got done it was about noon when we evacuated the hospital and about 1:30 when we got everything cleaned up at the Children's House and hit the road. Thanks to the generosity of love of our church family and friends, Trace had tons of presents and stuff that we had to move, but we made it. He slept most all of the ride home.

Yay, we're home!!! Putting together his Melissa and Doug Garbage Truck that we got him as a homecoming present (he LOVES this truck):


He's done progressively better each day, and is very active - and bossy - "I want to sit on the couch" "I want in my wheelchair" "I want to lay on the floor" "I want...I want...I want". We have lined up and sorted matchbox cars, tractors, and stuff numerous times - in numerous Trace was even laughing last night, which was wonderful to hear. We are still giving the Oxycodone every 4-4/5 hours and Valium before bed and once during the night. The resiliency of kids is completely amazing, Trace's strength and understanding is very inspiring.

The coffee table parking lot of sorted cars and tractors:


Taylor and Papaw:


While we were in Baltimore, my dad stayed with Taylor so she could go to school and be comfy at home (children under 16 are not allowed to visit in the hospital anyway, so this was also to allow us to concentrate on Trace). She handled it very well, and we talked on the phone several times daily. John took her to Walmart on Friday evening and let her pick a toy...she chose a hula hoop. She practiced until bedtime on Friday and ALL DAY Saturday so that she could hula hoop for Trace and I when we got home. John said she even made up a song, but she wouldn't sing it for us.

Note: Taylor had no previous experience with hula hooping, and I am unaware of any crazy hula hooping skills that John could possess to teach her, so she taught herself this in one day (sorry the video is a little distorted, I forgot and turned the camera I had to rotate it in Movie Maker):

We are very thankful for all the prayers and well wishes, and continually amazed by our POLP family, the support is amazing. Trace is loving getting cards and small presents in the mail! We are also very thankful for the Believe in Tomorrow Children's House, which is a wonderful place and definitely worth supporting - and if you have appointments at Johns Hopkins - ask for your doctors office to refer you to them, it is only a block from the hospital and very affordable.

Only 7 more weeks to go until the casts come off and we can see those straight little legs!

Sunday, March 14, 2010

Episode 1: Curvy Legs

As most everyone knows, Trace is having his legs straightened this week. His legs are very bowed, which is caused by his achondroplasia - the fibia grows faster than the tibia, thus the legs bow. Trace's bowing has become severe, causing him pain and thrusting of the ankles when walking. The surgery is pretty much cutting sections out of the fibia and rotating to straighten. The legs will be set with pins and he will have full leg casts on for 8 weeks - with no weight bearing. Sounds like fun, huh?

Everyone has been asking what Trace knows. We have been talking with Trace about his surgery since Dr. Ain told us he had to have it done - that was in mid-November. Trace knows he will have casts and won't be able to walk. He knows that a doctor will put him to sleep then Dr. Ain will use a special knife to cut his legs. He knows that he will be staying in the hospital for a few days afterwards, and will get medicine so his legs don't hurt. He has asked questions at random times about the surgery and the casts and what he will and will not be able to do. It's amazing how much a young child understands.

We picked up his wheelchair last week, and he (and Taylor) thinks it is great fun...we'll check back on that in about a month. He's got tons of toys and stuffed animals packed to take with him (I'll weed those down tonight after he's asleep). Our wonderful church family gave us a huge tote full of wrapped presents for Trace during his hospital stay - I am still very overwhelmed by their love and generosity. We're off to Baltimore tomorrow, the surgery is on Wednesday morning. Everyone say an extra prayer for all of us. Taylor is staying home with my Dad, she needs a few extra prayers too, as she is worried about her bubby and has never been without either John or I, and definitely not without Trace for any length of time.

Enjoy Trace telling a little about his surgery - although he pretty much just turns into a goof ball!