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 complainer...as 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. Soooo...as 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 something...so 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: