Tuesday, July 9, 2013

Sam Update, Counting Our Blessings

Sam is now 7 weeks post op from his external fixator removal surgery.  At 6 weeks it was time to get a set of x-rays done so we headed to Columbia St. Mary's Hospital, closer and easier to get x-rays on disc then Childrens.  We went for x-rays the day before my friend Lisa's funeral so my normal dread of having medical procedures done with Sam was additional to my feelings of loss and grief for my friend.  Before we headed in we folded our hands and prayed for calmness, good listening, understanding and comfort to help Sam get through the process.  Due to Sam's many medical procedures and hospitalizations he has always been medically evasive.  Add in being hard of hearing and having sensory and auditory processing issues and you can probably feel my pain.  We checked in and received our beeper and after Sam had said "Hello" to everyone in the waiting area we settled in.  Sam asked to hold the beeper and I let him but what he did next startled me.  Sam leaned over and said "Mama, Lisa", I looked at him confused since Sam has great difficulty pulling out proper names he tends to fall back on "Lady" or "Man".  I looked at him and said "What did you say?" and again he leaned closer and said "Lisa".  I teared up wondering if Lisa had decided to join me at this appointment and I certainly hoped she was going to assist.  Our beeper went off and we headed back to the x-ray department.  The technician looked familiar to me and I asked "Are you a Ford girl".  She said "Yes, I am". I explained that the day her father passed away was the same day my Mom also passed.  Is this all starting to give you goosebumps???

We talked about loosing our parents and her two older sisters that I know well and then it was time to get Sam on the table.  I explained that he tends to be medically evasive and I would have to work with him.  I told Sam "Sam, no owies, just pictures...you can do this...and I am right here with you." He began saying "NO, no thank you" but I put my arms around him and he stood and with my help he was up on the table in record time.  I silently said "thank you" to God, Lisa, my Mom and any and all other angels that were there to assist.  We got through the 3 x-rays like it was no big deal. Hmmm...it helps to have angels.

The first x-ray is the frog lateral.  The bright line is the hardware that holds Sam's first pelvic osteotomy or shelf procedure in place.  The external fixator was Sam's 2nd major hip surgery, his first included a pelvic and femur osteotomy.  Yeah, it's not pretty...I was kinda hoping I would see a miraculously perfectly formed hip...but, I guess that wasn't the plan.  Okay, ugly but functional would be my second wish.

The next two x-rays are supine or face up.  Now you can see the comparison of his left and right hip.  Yeah, not very pretty or comparable at all and his right hip isn't without it's own issues, so neither of Sam's hips are perfect.

For a frame of reference let me show you a normal hip x-ray for a comparison to Sam's.

Sooo...x-rays aren't pretty, you know that when the x-ray technician kinda scrunches her face and let's out a breath when looking at your child's hip. We waited for our disc and left the hospital happy that the procedure was over and went very well.  I sent the disc via email to Dr. Standard in Baltimore.  Unfortunately he left for vacation the day I sent it...but good things come to those who wait...right????

I also included this information:

The OT and my guesstimate while Sam is in the pool is flexion 110, extension (he can lay flat on his tummy and tolerate my hand under his knee for a short time, 15-20 abduction, 5 adduction.

Sam is transferring himself at this point (no longer needs help), he will walk in the pool with a pretty substantial limp but tends to start hopping on the right leg. We haven't started with the walker because I wanted to make sure the femur was healed enough considering he had hardware removed twice.

What are our next PT goals and can he begin riding his 3 wheel adaptive bike?  

Given extra time I came up with a lot more questions, like 10 or so...I mean I had a week to think about it. So today I heard back from Dr. Standard and overall the news is good.  Sam's femur and hip are healed enough to begin weight bearing as tolerated.  So we will begin to utilize the walker again and see how that goes.

Dr. Standard's biggest concern is Sam's hip extension, he says:

The biggest prognostic factor  for Sam will be his hip extension.  If we can get his hip extension somewhere below 20 degrees he will have a near normal gait with minimal limp.  If his contracture remains above 20 degrees he will continue to have trouble walking and have a significant limp.   

 Push aggressively on hip extension, as aggressive as possible.  Throw everything at it and focus as much of your PT as possible on this area.  Otherwise he can walk and participate in activities to his comfort level.  If his hip extension is better he will walk better. 

Dr. Standard wants to get him in a HKAFO with a rachet hinge at the hip.  This is a brace that fits around his waist and then down the leg with a hinge that is adjustable.  You can put the hip is as much extension as he can handle for him to sleep in at night.  This may help augment PT efforts.  Let me know if you need a prescription for this and I can send one to you.  Dr. Standard will want to see Sam here in about 8 weeks.  

Sam's brace will have to have a knee, ankle and foot extension on the left side.  Not worried about Sam's reaction to the brace because he has adjusted to the Scottish Rite brace easily and he actually loved the extension bar in the external fixator so I think this will work for Sam and will help us reach our goal to gain more hip extension.

Sam has been given the okay to begin riding his adaptive 3 wheeled bike again and I hope to get him started on that soon.  I asked about leg length issues but we won't be able to accurately determine that until he reaches his maximum hip extension.

As to the future I asked...
Am I correct in thinking that because Sam’s collapse and age were advanced we are still working to stabilize and preserve the hip for as long as possible with the likelihood of a hip fusion or replacement somewhere in his future…hopefully distant future? 

Dr. Standard replied:
We would want to try to put this off for as long as possible.  We would look into the fusion first and then precede to the replacement if needed.  Downs syndrome kids typically are very difficult to fuse.  Dr. Standard has found that the bone graft is reabsorbed and it is tough to get a stable fusion.  So we would want to exhaust all other options before we go down that road.  

 Soooo...my action plan is to get Sam in the pool a lot since he has his best movement there.  I will add a PT to Sam's schedule since his aqua therapy is done by an OT but she can really get Sam to work with her and is extremely knowledgeable. The PT can help with measurements, floor exercises and if Sam's mobility continues to be an issue (standing or walking for any distance) I will have them fit him for a scooter.  We will hold off on the scooter until after Sam's 8 week appointment with Dr. Standard to see if he thinks we have reached Sam's maximum hip extension and we'll have a better idea what Sam's mobility will look like.

Not giving up on full mobility yet but want to be somewhat cautious in order to keep a stable hip for as long as possible.  In our world Perthes is just one of the many issues we are working on with Sam.

Due to Sam's brain injury, apraxia and aphasia he has qualified for a free trial of a speech device to help him practice his speech so he will return to speech therapy for the trial period.  

Sam's hearing has improved slightly allowing him to not need a hearing aid any longer but still requiring a FM system for amplification and filtering of background noise.  Working on setting up and implementing this new system with him.

Since Sam is off all narcotic pain medication we are ramping up his home neurodevelopmental program to help him continue to make gains in all areas of his development.

Most of all, Sam and I are enjoying our time together...laughing, learning and discovering new things everyday with less pain, less medication and a renewed hope in what the future may bring.  As always and as Sam has taught me we take one day at a time but we never take anything for granted and we always count our blessings.

Happy Summer to all our blog readers!!


  1. Hello Sue, I'm thinking of you. Jeanne

  2. Thanks Jeanne, been thinking of you too! Hope all is well as can be. Hope to see you soon.