Family Pic Nov 2015

Family Pic Nov 2015

Saturday, April 28, 2012

Aaron's Surgery Part 2

When Aaron was waking up from his surgery, he was in complete agony.  It was horrible.  His legs would "spasm" and cause him excruciating pain.  I have never heard him scream like that before.  It was so heartbreaking and frustating for me to watch him go through this.  From what I understand, when they "lengthen" the muscles and cast them as straight as they will go, his body/brain still wants to try and "contract" the muscles the way they are used to being.  Thus the spasms.  On top of this, the muscles have been traumatized by the lengthening/teasing of them.  As he became more lucid he began screaming, "Take the casts off!"  I can only assume that he thought the casts were causing his pain.  I tried to reason with him that they couldn't take the casts off and that even if they did take them off, his legs would still hurt.  But he was beyond reasoning with and continued screaming.  I am sure it was scary for him to have his legs confined in a position they have never been in.  By the time they moved him to his recovery room, his blood pressure and heart rate were spiking pretty high every time he had a spasm.  At one point his blood pressure reading was 153/102 and his heart rate was hitting the 150s.  The nurses were trying to rush the doctor to order some better pain management meds.  They ended up finding the perfect combination of valium and morphine.  The valium not only relaxes the brain, but it also relaxes the muscle spasms.  It worked very well.  I was so much more relieved when they were able to calm him down.  But this combination of meds caused him to be very sleepy.  This was good for overnight!

The next day (Friday, March 23), they wanted to wean him off of the morphine to Tylenol with codeine.  And he really wanted to go home!  They wanted me to encourage him to start eating and drinking so they could take out the IV.  In order to go home, he obviously needed to be able to take his meds orally, be able to eat and drink sufficiently, and get into a wheelchair.  But he was fighting sleepiness and not feeling like eating or drinking.  He complied as best he could.  Here he is forcing the best smile he could muster up, given how uncomfortable he was.  Any slight incline in his position (other than completely flat) caused him significant pain on the backs of his hamstrings.  He could only tolerate an inclined position for short periods of time.

Later that afternoon, the doctor told me he could go home whenever I felt comfortable getting him home.  It is about a 4 hour drive from Philadelphia to our home in Virginia and I was worried about having to make stops with him or hitting traffic if we traveled during the day on Saturday.  So I opted to hit the road at 8 pm that Friday night.  My hope was that I could drive it straight through while he slept.  They gave me a specially designed restraint system so that he could lay flat across the middle bench of my suburban. 

I definitely made the right decision as we hit no traffic and made it home in a little less than 4 hours with only one stop for gas.  He did become pretty uncomfortable and cried during the entire last half hour of the trip.  I was so glad to be home and so was he.  Carrying him flat was quite a challenge.  He normally sleeps on a bottom bunk bed, but this would have been too difficult to get him onto.  So we pulled out our futon in our bedroom and let him sleep there for the first couple of nights.  Here he is right after we arrived home and got him set up for his first night home.

Shriners is a wonderful hospital and the doctors and nurses were so good to him.  The pillowcase and tie dye blanket you see in the picture are his to keep from Shriners.  They let him pick them out himself.  He still sleeps with them : )

Since his surgery, we have made two follow up visits to Shriners Hospital.  In my next post, I will explain more of the post-surgery recovery, the "wedging" process they have had to do, and when he is to get his casts off.

Wednesday, April 18, 2012

Aaron's Surgery Part I

I would like to update you all on Aaron's leg surgery in a couple, maybe even a few parts.  I keep intending to sit down and write a post, but there just seems to be so much to share that I don't have the time to cover it all in one sitting.  So my plan is to go back and cover a little bit at a time.

After applying and being accepted into Shriners Hospital for Children in Philadelphia, having an evaluation, and completing a motion lab study, Aaron's surgery on his legs was first scheduled for November 18, 2011.  I canceled and postponed it.  Knowing what he was going to endure, that he would be pretty immobile for a couple of months.....I just couldn't do it over Christmas.  He was SOOOO much looking forward to Christmas!  It seemed that it was all he talked about.  Even though he can't walk unassisted, he is quite proficient at getting around by crawling.  Some of his friends at preschool have challenged him to crawling races and he is still the reigning champ!!  Even though he can't walk and run like other children he is around, he still has so much fun and never complains that he can't.  I often wondered if I would catch him watching other kids, looking at them longingly, and wishing he could have the same fun that they are having.  But he truly doesn't.  When kids are playing outside, running around, kicking balls, whatever....he watches them in absolute delight.   He seems to be having fun through them.   Don't misunderstand me though.....if you ask him directly if he wants to learn to walk someday, he enthusiastically exclaims YES! 

Ever since he could understand English, we have been talking to him about having surgery on his legs to help him learn to walk.  He understood why we moved the surgery back and was perfectly okay with it.  Christmas was on the horizon and he was just so excited about it.  And yes, he did thoroughly enjoy celebrating Jesus' birth.  After Christmas, he began talking more about the surgery and we continually explained the surgery and answered all of his questions.  We still wondered how much of what we told him he could comprehend.  He knows he would be asleep while the doctors "fixed" his legs.  He knew that nothing would hurt while he was asleep, but that when he woke up he would be in pain.  We explained that the doctors would give him medicine to help it not hurt so much.  Even as we left the house for the 4 hour drive to Philadelphia, there was not an ounce of apprehension.

The surgery was Thursday, March 22.  He and I drove up the day before and stayed overnight with friends that live in the city, not more than 15 minutes from the hospital.  This has been such a blessing to us, as we have had to make two follow-up trips since the surgery.  His surgery was at 9 am and we needed to be at the hospital by 7.   He was still not the slightest bit nervous as we got out of the car and headed into Shriners.  In fact, he was excited!  They took us up to his room that he would stay in while he recovered.   Now all of the sudden he was nervous.  It was like a switch.  I am still not really sure exactly what hit him at that moment, but it hit.  He started crying and getting weepy and told me he wanted to go home.  It was so sad, especially since I knew how difficult his immediate AND long term recovery was going to be. 

Soon they were ready to take him to the pre-op room.  I was able to stay with him until about 10 minutes after they had given him some oral medicine to make him relax and get sleepy.  They wheeled him into surgery at 8:50.  During the surgery, I kept myself busy having breakfast in the cafeteria, unloading the rest of our things from the car up to our room, praying, reading the Bible, and eating lunch.  The surgery was almost exactly 4 hours like they said.  The purpose of the surgery is to "lengthen" the muscles that are so severely contracted.  This lengthening of these extremely tight muscles is done by cutting and/or "teasing" the muscles in different areas in order to stretch them into the position they have been unable to stretch to.  The lengthening procedure was done on his abductors, hamstrings and heel cords.  Then his legs were cast from his groin down to hold his legs in the correct position, which included a bar between his legs to hold his legs open.  Prior to surgery, he picked to have his legs cast in two different colors.  Orange on one leg, blue on the other.  His two favorite colors :  )  Here is a picture of him when I first saw him in recovery.