Our Hope

By sharing our story and our experiences with this birth injury we will hopefully educate people. Knowledge is power. Our hope is that you will read this blog, share it with your friends, and they will share with their friends. Then in some small way we have prevented other families from having to go through what we have.

Wednesday, February 26, 2014

Jadon is 5 today!

Today is Jadon's 5th birthday!  I can't believe he is five already!  Time is flying by!  He has changed just a little bit!  LOL!

At the end of January we made our trip back to Philadelphia for Jadon's post op check up and three days of therapy with the therapist out there.  We learned that they took tendons from his ring finger and his middle finger.  We forgot to ask when we were there for surgery which ones they ended up taking.  We learned a whole new set of exercises to get the wrist strong.  Jadon is not allowed to put his wrist into flexion for 12 weeks post op and he is also not allowed to weight bear for that same time period.  Jadon worked hard while we were out in Philadelphia and was pretty tired by the end of each day.  So were Mom and Dad....

We had two therapy sessions each day.  One in the morning then a break for an hour or two.  We would pick up lunch at the cafeteria or the little sandwich and wrap shop downstairs in between times.  Then if we had lunch and still had time to kill we would go let Jadon play in the play area at Shriners.  His Dad introduced him to air hockey one day.

Jadon's first therapy session was spent making him a brace to wear to protect his wrist at all times except when we are doing therapy.  Jadon did pretty well during our therapy sessions in Philadelphia but by the last day he was done...he was having a lot of swelling in his arm and fluid build up.  His skin was also very irritated.  His skin tends to be very sensitive on that side so I was thinking that the lotion I had used to help his dry skin (from being in a cast) was the cause of the irritation.  Dr. Kozin told us to discontinue use of the splint until the swelling and the irritation went down.  Dr. Kozin says he sees skin issues like that a lot on these kids and he was not too worried about it.  

On Wednesday after our final therapy session we started for home.  We made it all the way home on Thursday and Jadon's skin was not getting any better.  By Friday  I was starting to get concerned.  The swelling and the redness was not going away.  I pretty much made Jadon lay on the couch with his arm elevated the entire morning hoping that would help....

By Sunday I knew we had bigger issues.  Something had changed...these blisters started appearing all over his arm and they were oozing and gross.  We took him to Prompt Care to have a doctor take a look at it.  The doctor said it was definitely an infection and she was pretty sure it was impetigo.  She gave us an ointment to put on his arm and an oral antibiotic.  We began to see improvements quickly after that.  Everyday it looks better and better.  Within a week it was all cleared up!  Whew!

This is what is looked like Sunday.

This was day two...big difference!

Day three!  WOW!!  Almost healed!

By day three of treatment his arm was finally healed enough that I felt comfortable resuming our home therapy exercises.  We are supposed to go through all the exercises 3 times a day and do scar massage twice daily right now.  Scar massage to work out any adhesions or scar tissue that might delevelope and get in the way of his function.  Two of his scars from this surgery are feeling great and two still need a lot of work.  Yes...he has four incisions with this surgery. 

We were also able to get to his therapist here at home.  We were told by Dr. Kozin's therapists to see her 2 to 3 times per week.  It was up to her.  Since we have been home we have been taking him 2 times a week. 
We are over halfway through Jadon's recovery .  All his restrictions will be lifted at the end of March. Jadon's therapist wanted to see him work up to 30 degrees extension and he is at 50 degrees so she is pretty happy.  Jadon is doing so well that we get to go down to once a week beginning in March!  

We also discovered something new....one day in therapy our therapist had him do something and saw supination.  Something Jadon has NEVER had before!  I knew she had seen something surprising because she stared at his arm then she had him repeat what she had just asked him to do.  That time we all saw it!  I was so excited I wanted to cry!  This is huge!  We can't really work on supination too much until the restrictions are done.  We don't want to do anything that might jeopardize that tendon healing properly.  As soon was April come we are going to see if we can't get more supination and pronation.  At this point we have seen him maintain neutral (keep his arm turned so his thumb is up) and that is wonderful to see!  

For now we are just working hard ....getting our home therapy time in three times a day and scar massage twice a day.  Like a typical preschooler some days he is cooperative and some days he is not...

This particular day Jadon was bored with his exercises and ready to move on but check out that awesome wrist action!!  

We are going to keep working hard to get all the benefit we can from this surgery!  

Monday, January 6, 2014

Wrist Tendon Transfer

Last week we made our journey to Philadelphia for Jadon to have a wrist tendon transfer with Dr. Kozin.  It was quite an adventure due to winter weather conditions!  We left on New Years Day and knew that a big snow storm was heading for the eastern states.  We were crossing our fingers hoping we could beat it there.  We did but by only an hour!  It was a close call but thankfully, we managed to get into the Front & Erie Ronald McDonald House!  Here is a pic of Jadon with Ronald....we try to get one of him each time we stay!

When we woke up bright and early on Friday morning there was about 9 inches of snow on the ground.  Luckily, we only had to drive about 5 miles to the hospital!  Jadon was one of the first surgeries of the day.  We were a little nervous about how Jadon was going to react to leaving for surgery.  Thanks to the awesome staff at Shriner's there were no issues.  Jadon was relaxed and happy as usual.  It was pretty entertaining when they gave him Versed to make him relaxed so they could put him to sleep.  He was so loopy.  Laughing at nothing.  When the nurse took him from us they walked off singing "Wheels On The Bus" together.  Later, the nurse called me to tell me he was asleep and they were getting ready to start surgery, she also told me that when they got to the part; "The horn on the bus goes"...Jadon yelled "Honk, Honk, Honk" very loud.  She said it was adorable and everyone got a good laugh.

While we waited for Jadon to get out of surgery we got a chance to talk with another BPI family.  They were in the waiting area waiting for their son's turn to have surgery.  Their son was 15.  I always like to meet the older kids and see that they are happy, successful children.  Visiting with two families in the waiting room, made time fly by.  Before we knew it we were being called to come to the PACU.

Just like after his shoulder reduction/tendon transfer Jadon slept for several hours after surgery.  That anesthesia really drags him down!

Yes....his cast is orange.  His choice...well...his second choice.  His first choice was black but we told him it would be hard to sign a black cast so he chose orange!

After several hours of sleeping he finally decided to wake up!  He was happy and seemed to be in very little pain.  He was very, very hungry!  He had two apple juice cups first to make sure his tummy was okay then he proceeded to eat three singe serve packages of graham crackers, a cup of applesauce, a pkg. of cookies and some milk.  Before long it was dinner time.  He chowed down on some pizza!  By evening he was smiling and happy!
He loves showing off his cast!  That is why he is holding it up in a lot of the pictures.  He says that the cast makes him feel stronger.  Funny kid!

I was worried about how his night would go.  Was worried that pain might get worse and he would not be able to sleep well.  He had no issues and slept through the whole night...as well as you can when people come in every few hours to check vitals and change IV fluids.  In the morning he was ready for pancakes and to go home!

We found out that on the way home we would once again be dealing with a snow storm in the Midwest.  If we took two days to do the trip home we would most likely not be able to travel at all on the second day because of bad roads.  We decided to make the trip in one day and try to beat the snow storm to our house!  We got discharged at noon and hit the road right away.  We told Jadon that we were going to make short quick stops and would be eating in the car.  We had clear roads almost the entire way home!  We made the trip in a record time of 13 hrs.  We saw the first snow when we got off the interstate to drive the 20 miles home on rural roads.  We got so lucky!  We were worn out and tired but it was worth it!  Jadon's brother and sister waited up for us and were the first people to sign his cast!  He was very happy to see them.  His sister met him at the car and the first words out of his mouth were "I love you Shelby".  It is hard on all of us to be away on these trips!

Right now I am waiting for a phone call back from Linda, Dr. Kozin's nurse, to schedule our follow up appointment.  We have to go back in three weeks to get the cast off, and have a couple days of therapy at Shriner's with their therapists.