Tuesday, October 2, 2012

Enjoying The Best And Praying About The Rest

My California trip seems so long ago and I really need to finish posting about it because I have great pictures and awesome videos to share...but life has a way of changing our direction, our perspective and our reality.

As I explained in my last post Sam's mobility or lack of mobility became my priority.  Last week Tuesday Sam had his sedated arthiogram CT scan.  If you remember from my last post Sam more or less told me that we needed to do this.

Going into the appointment that day I felt so strong about the possibility that this would give us all the answers and some how, some way we were going to be able to finally help Sam move without pain.  I told Jeff, "Wouldn't it be great if they found something that could easily be fixed and Sam was walking like he did before this surgery, before Perthes".  God spoke to me through different means and I went to Children's confident that this was going to be the answer to our prayers.

Sam woke up and he went into Children's happily until of course they wanted to do a pulse ox which always freaks him out and then the happiness really took a turn when they decided to put the plastic bracelets on.  I convinced him the nurse could put them around his ankle over his sock and we would cover them up so he didn't even have to see them.  It was a good idea in theory...unless you have Sam's sensory issues which tend to escalate your OCD issues of really wanting those bracelets off.  It took about 15 or 20 minutes of threatening to turn off his movies on his Ipad to get him past this experience but he finally stopped trying to take them off and would just blow on them.  I gave Sam his dose of Versed which for the second time in Sam's life had the desired effect of making him drowsy.  During previous sedations it actually made him hyper.  Sam drifted off to sleep but woke up each time they tried to put that blasted gown on.  He wanted nothing to do with that and he was going into this procedure with just his underwear and socks on...he's really quite comfortable with his body image but not so comfortable with those scratchy hospital gowns.  I was calm and confident when he was wheeled away.  I felt like we were going to get answers...that this needed to be done...and that we were helping Sam.

The sedation, injection and CT scan took about an hour and a half to complete and they called me into recovery as Sam was just starting to come out of anesthesia.  Thankfully he came out gentle and calm and I again felt reassured that we were doing the right thing...yep this is what we were supposed to do.  Sam dozed for a while but when he did come to he didn't want to hang around and wait for the nurses to complete the paperwork...he wanted out of there...and he wanted out NOW.  He asked to get dressed, then he wanted his shoes on and PLEASE, PLEASE finally cut off those blasted bracelets.  He thanked the nurse for her skill with the scissors and her removal of those plastic torture devices and then he wanted to get into his wheelchair.  He was ready to jump out of the bed before she even lowered it and as soon as he was in his wheelchair he was pushing himself out the door.  I wheeled him around while Jeff signed his life away and in record time we were headed out of there.  Note to self:  a persistent child can move medical personnel much, much faster than an angry parent.

The next day I waited for the call to come in from the orthopedic surgeon.  After a few rounds of phone tag we finally hooked up and I listened with anticipation.  But I quickly lost my enthusiasm when I heard "We didn't really find anything definitive...there is nothing to easily fix the pain or issues...we are not really sure what is causing Sam pain or causing him to walk less or stop walking."  And then as if this story is on rewind I heard again, "Sam came to us with severe hip dysplasia and 100+% collapse of his femural head...an advanced stage of Perthes.  The surgery was successful in containing the hip in the socket but the overall structure and damage to Sam's hip is extreme."  My only ray of hope:  "There is a ridge of bone outside the socket which might be causing Sam movement issues but it would normally not present acutely, so we are not sure if that is an issue or not."

It is times like this that I feel like all the air is just being sucked right out of me...I'm left frustrated, kinda angry, tired and hurting.  My brain and heart hurt the most as I think about this wonderful little boy that I just want with every fiber of my being...to walk and move without pain.  My brain takes me back to the road trip to Maine and Vermont when Sam was hiking, walking and running along the beach with a smile from ear to ear and it has the affect of adding salt to the wound.

But then I look at Sam...happily folding laundry while laying on his stomach on the living room floor.  I watch him smile and laugh as I throw another load of clean clothes on top of him.  I watch him sit up and begin handing me clothes as he tells me the color, owner and item description of each one...and I smile.  But that smile turns to concern when I see him quickly lay back down on his tummy and sigh heavily when the pain of sitting becomes too much.  I sigh...deeply.

Yeah..he adjusts...but is that all we can hope for???  Is the idea of him walking and moving without pain an unattainable dream???  His orthopedic surgeon asked me to meet with another orthopedic surgeon to discuss what removing the ridge of bone would entail.  I appreciate that we can get in so quickly and I also worry that what he saw on the CT scan has him jumping through hoops too.

On Friday we met with the other surgeon and I got my first look at Sam's CT scan.  Seeing your child's bones in a 3 dimensional form is indeed really cool (it is amazing that they can turn it in any direction and show all the detail) but at the same time seeing in 3D how distorted and abnormal your child's hip is...is a little disturbing...really takes a lot of the coolness out of the whole procedure.  Sam's hip structure is abnormal in many ways, as I looked at the 3D model they showed me of a normal hip...I had a hard time trying to figure out what was what on Sam's hip.  Where the beautiful round ball should be was a twisted mass that kinda looked like you took a marshmallow and jammed it into too small of a hole and all the stuffing squirted out the sides (yep...that's my technical analysis).  I couldn't help but think of the word "impingement" when I saw all the excess bone outside the socket.  The findings on the report state:  The left femoral head epiphysis is nearly completely flattened and densely calcified in a linear fashion. The flattened femoral head/metaphysis articulates with the pelvic bones at a shallow "high riding" lateral dysplastic acetabulum.  Intra-articular contrast shows the extent of the capsule about the femoral head. No obvious loose bodies are appreciable.  Hardware at the left proximal femur and supra-acetabular left iliac bone is noted.  The left proximal femur shows vargus alignment.  Yeah...that's clear as mud...my definition is sounding much better now isn't it???  Sam has loose joints and low tone, some lovely attributes that come with a diagnosis of Down syndrome so I can't help but picture Sam trying to weight bear with no ball in the socket so this ridge of bone just smashes along the side of his hip socket causing all kinds of pain and pinching of who knows what.

I wanted this surgeon to tell me he could fix it...he could fix Sam.  But I didn't get that...instead he was kinda wishy washy with a lot of  "might be helpful", "not sure", "the bone could grow back and the surgery would have to be repeated", "this may not be the cause of his pain" and yadda, yadda, yadda.  When he left his nurse explained that this was major surgery, similar to his first surgery and he would probably be back in his body brace while he healed and then we would have to begin rehab all over again.  When I asked the doctor about removing the hardware he explained that they would not want to do both things at the same time because then they could not determine if the surgery was successful or if Sam was having complications from the hardware removal.  He also mentioned that due to Sam's slow bone healing that if the hardware was removed Sam would have approximately 6 holes in his femur and could possibly snap his femur before those closed up sufficiently or his bone may remain weak and if the hardware remains in it will continue to impede his growth.  Wow...this just gets better and better.

But I want to stop for a minute...and tell you about something else that happened before we went to see this surgeon. We were early because I wasn't sure how much rush hour traffic we would encounter so I gave us extra time to get there.  As we arrived I decided to stop at the deli after the skywalk to grab a bottle of water.  I noticed a young man in his 30's looking at Sam and I didn't think much about it because Sam often gets noticed when we are out and about.  I purchased my bottle of water and then stopped to open it and check my timing.  The young man walked up and said "Hi, do you have a moment?".  I said "Yes" and he continued "Who is this little man?" I told him "This is my son Sam" He said "Hi" to Sam and asked "Where are you headed today".  I told him "We are going to ortho to review a CT scan and talk to a surgeon." At this point the man began to tear up, as he was reaching into his pocket he told me "My best friend died today." I told him "I'm so sorry for your loss".  He handed me a $100.00 bill and said "I want you to take this and make his day special." At this point the man was visibly shaken and as I tried to hand the money back to him he said "Please, take it and do that for me." and he began to walk away. I called to him "God bless you" and he said "God bless you and your family too" and he hurried away as he began to sob. I began walking toward ortho stunned and not really sure of what just happened.  I turned around and the man was gone and I continued walking with the $100.00 bill in my hand.  I stopped and said a prayer for the man and I wiped away my tears.  I replayed what had happened in my head and I began to wonder "What does it mean God, what are you trying to tell me or show me??"  This is the second time this has happened to Sam and I, the first time was on our trip to California and a complete stranger gave me $20.00 because Sam touched his heart.  So what do you think this means???

My daughter and I thought possibly and kinda frighteningly that the man was telling us that we needed to make every day special because we weren't going to have that many more on earth.  My Mom called me today and read me a story from the Milwaukee Journal about a young boy named Bo from Door County that died of Leukemia on Friday.  Here is the story.  I don't know if the young man who gave me the money was referring to this young man but there was a tie to Children's Hospital and other things from this boy's story made me wonder if this could be related.  In the story they talk about Bo's philosophy: "Your actions set the pace and influence the future," Rolf Johnson said. "Bo's big deal was that you had to reach out to people, because people had done that to Bo."  A friend of mine and her mom thought that maybe God is trying to get me to receive from others because I am a blessing to many but I often struggle when people willingly offer to help me.  Another friend felt that I had dropped off in my writing on the blog and God wants me to share my journey and story with Sam to continue to bless and inspire others.  I'm still not sure and continue to pray for wisdom to figure all of this out.  So my readers...what do you think my message is???

After much thought and prayer over this weekend I have called a meeting with Sam's pediatrician to discuss the surgery option from Children's, to discuss pain management for Sam and to brainstorm on what our next steps should be.  Is now the time to head to Sinai Hospital in Baltimore and meet with Dr. Standard and Dr. Mont to hear their thoughts and suggestions on how to help Sam?? Surgery for Sam comes with it's own risks and issues, recovery, rehab and caring for Sam's medical needs has been my focus for the last two years.  I continue to pray for guidance on all of these subjects.

But no matter what, Sam and I are in this together.  I will continue to remember the young man's advice to make Sam's days special and Bo's advice that my actions influence Sam's future.  We may have even more challenges than we had but we are going to continue to make each day the best that we can.  Today when my brain couldn't shut off from thinking "what's next", I decided to take Sam and Buddy for a walk.
I love this picture of the two of them!

 I always like to give Sam a chance to take pictures too, so here is one of his.

 I don't know who's smile is more cheesy...Sam's or Buddy's.

Another cheesy smile!!!

I think in this one they are saying, enough with the camera, let's go home!!

 Here is another one of Sam's perfect pictures!!!

 A wonderful walk on a wonderful day...with a boy...

and his dog!!!

Tomorrow make your child's day special.  It doesn't have to be in a big way, a walk, an extra book read while snuggled up together, a special meal, taking time to play, extra hugs or just reminding them how much you love them.  Do that...for Sam...and Bo...and the wonderful young man who reached out to a complete stranger to honor the memory of his best friend.  Have a great night and I leave you with a poem written by the mom of a dear friend of mine.

Morning Sonshine
As I soak up the Son,
he changes my heart.
Just sit and relax,
he is doing his part.
Mine is to trust
and obey what I hear.
He will take worries
and remove every fear.
Soak in the Son-
each morning a new-
he'll bring the changes
and make me brand new!

By Diane Whiteside 


  1. Sue,

    I have not been through anything like what you have, so what I have to offer is not much, except my prayers and hopes that you can find the answers for Sam. The only thing in the same category we have had is our daughter with severe jaw problems who has had four surgeries. After her first surgery failed with a doctor here in Missouri, we took her to one of the foremost experts in that type of surgery - all the way to Dallas and we got great results. I knew within minutes of talking with him when we saw him after the failed surgery, that we were where we were supposed to be. Hope you can find the right dr/drs for the job. Blessings, Anne

  2. Sue, sending prayers for Sam. You are such an inspiration. Thank you.

  3. Thanks for sharing us the details of Sam's life. You've been an inspiration to us. Your strength and faith is remarkable. Sam is truly blessed to have parents like you.