Monday, October 15, 2012

Looking For Some Hope!

As I embarked on this journey with Sam I had no concept of how much his challenges and struggles would change my character, my abilities and my perseverance.  Sam's journey has taught both of us so much and we are about to learn a whole lot more.

Sam and I are headed to Sinai Hospital in Baltimore, Maryland to meet Dr. Shawn Standard, a Perthes specialist we think will want to save his hip and Dr. Michael Mont, a pediatric orthopedic specialist who may want to replace his hip.  You can read more about each of these excellent doctors by clicking on their name.

Sam continues to have hip pain which I have to monitor and gauge by watching his actions and activities.  Sam is not a I have always said I think Sam wakes up each day and just comes to terms with the fact "that this is what it feels like to be Sam Mayer today"...and he carries on.  He smiles, he laughs...but he also crawls instead of walks, puts himself into traction, lays in bed or on the floor alot....when he does walk it is on his tippy toes on the left side with a severe limp and he often holds his breath.  Lately I have seen the muscles in Sam's left leg quiver when he stands and on rare occasions he has told me that it hurts.  Please understand that by the time Sam tells me it hurts the pain is over the top...more than you or I could ever imagine.  This is a child who doesn't ask to see a doctor or go to the hospital until his oxygen stats are in the low 60's or he is close to passing out from lack of oxygen. I watch Sam I see an increase in pain, a need for stronger pain medication, I can tell by his frustration level and his inability to concentrate that his pain has increased.

But pain medication is a whole nother battle.  Sam did well after surgery on Roxicet which is like liquid morphine, not something I really want to give my child for very long.  Over the counter medication appears to have little or no effect.  The line of ibuprofen products can not be used because they inhibit bone growth.  The line of acetaminophen products isn't considered a good choice for children with Down syndrome because of the liver enzyme issues they already exhibit.  But we have to use we tried Tylenol with codeine...that was a mistake.  Sam began to violently throw up in the doctor's office until every bit of that medication and everything else in his system had been removed.  After consulting with Sam's pediatrician last week we decided to to try Ultram and Sam's system seems to be tolerating this pain medication.  He did have an increase of the rash that is normally present on his rear end but we are using MRSA oils to help keep that in check.  I would love to say the Ultram is allowing Sam pain free movement but it just appears to make his pain somewhat tolerable.  I am hoping the pain will be tolerable enough to travel on an airplane.

We were thrilled to hear back from Dr. Standard's nurse Ann that she could move our appointment up from January 2013 to November 15, 2012.  I sent along a picture collage of Sam so they could see the little boy that needs their help:

As much as I would like to be blogging I needed to make travel arrangements and continue to work with Sam each day on his home program.  Travelling with a child with special needs who has increased pain levels is nothing I would wish on anyone.  This is going to take some consideration.  Now that we have a pain medication that Sam can tolerate I needed to figure out how to get him to Baltimore.  As I searched for airline flights I quickly became discouraged as I noticed all of them were connecting flights and expensive flights.  Getting Sam on and off 4 different planes on this trip was not something I really wanted to do.  So I continued to search and took a look at my favorite airline site Priceline.  I was baffled that each time I put in my search it took me from Milwaukee to Washington DC.  I checked and made sure I put in Baltimore but it still showed me really reasonable tickets to Washington DC.  And then I realized...I had some divine intervention...God knows our every thought and he just showed me that flying to Washington DC was a direct flight and less than half the price.  I knew I was getting a car too so finding out that driving from Washington DC to Baltimore on a good day would take 75 minutes was nothing...after all I have driven 19+ hours on a road trip in a day.  But thinking again about Sam I knew sitting on a plane for that long would require him to stretch out or lay down so with my travel points I upgraded to a SUV to allow Sam to comfortably travel during our drive to Baltimore. 

Whew, 3 major things off the list...pain medication, airline and a vehicle.  Now we needed someplace to stay.  I was thrilled that when I received my packet from Sinai Hospital that they included information about the Hackerman-Patz House.  This is located right on the grounds of Sinai Hospital and is like a home away from home.  I was again thankful that when I called they could accommodate our  2 night stay. Another item off the list.  God is good!!

I now have to think about how to administer Sam's medications for thyroid and pain while we travel, pack up his nutritional supplements and probably some of his go to diet needs like his special gluten free bread, ghee butter and PH diet approved snacks.  I will also have to make sure the Ipad is charged and ready, loaded with something new to divert Sam's attention from any anxiety caused by his pain.

I'm not sure what we will hear from the doctors...I don't know what decisions will need to be made.  I can't go there just yet.  Sam has taught me to take life "one day at a time", so with the travel arrangements made we focus back on our day to day program and appreciating each and every day that we are given together. I'm really just looking for some hope...someone to help Sam move without pain.  I'm not sure if he will walk or run like he did prior to Perthes but I pray that he will be able to have more movement and less pain.

I ask for your prayers and good thoughts as we embark on another part of our journey.  I hope and pray that Sam can tolerate the travel, that the security check is quick and respectful and an extra dose of patience and perseverance to get Sam on and off the plane.  I will talk Sam through each and every step letting him know that we are in this together and hopefully at the end of this journey he will turn to me as he so often does and says "Mom, WE did it!!"


  1. Dear Sue, You and Sam are in our prayers and I will let my friend know who has a prayer group. Audrey