Monday, October 4, 2010

Hurry Up and Wait!

It seems like in the last couple of weeks we have been in a big hurry to see the pediatric orthopedist, to get a second opinion and to learn everything we could about Perthes disease.

Each of the doctors explained to us that Sam's Perthes is in an advanced stage and at a critical point due to his age and the amount of damage. They have advised us to restrict his movement and give him medicine for pain and inflammation. They have explained to use that the head of the left femur is flat instead of round and that the femur has pulled forward and away from the socket. It all sounds very painful. Here is a picture of a normal hip.

Here is the x-ray of Sam's hip. You can see how the head of the femur is no longer round but is flat and the femur has pulled away from the shallow socket. You can also see the angle of Sam's femur is much straighter than the normal hip x-ray.

With all that is Sam??? Well, honestly Sam is pretty much Sam. He's not really complaining of a lot of pain, he is still walking, sometimes running and even sometimes marching....which personally makes me cringe and I have to advise him to stop and just walk. He's happy, he's working well with me and if you didn't know what was happening you probably wouldn't guess that Sam is going through anything. Overall it would seem that Sam is doing well.

However...because I spend so much time with Sam, there are some changes that I have noticed. Sam limps at times, his gait has changed and his feet often turn out more than usual. Before we got the diagnosis I had noticed that Sam didn't run as much or for as long as he used to and his run looked different. Now Sam does not walk for as long as he used to. Sam's new preference is to sit on a soft surface and I have heard him say "Ow" a couple of times when sitting on a wooden chair or sitting on a floor without carpeting. Sam is usually pretty active but often in the afternoon now he will ask to lay on the couch. In fact this was how I found him one afternoon.

I have never discussed or showed Sam a traction position. I guess he just figured out that this is what feels good. I now find him quite often in this position.

Sam has been dressing and undressing himself since he was about 4 years old. Recently at night he has asked me to help him to remove his pants and put on his pajamas. Sam used to put his hands on my shoulders for balance but now he is leaning into me when I am helping him, I notice the increased pressure.

Sam went outside last week and wanted to ride his bike. I saw him take his bike out to the driveway, put on his helmet but he couldn't lift his leg high enough to clear the seat or the bar in front of the seat. He took off his helmet, put his bike back in the garage and came in to lay on the couch. I walked in the other room to again shed a few more tears.

I called Children's Hospital on Wednesday to begin the knowing that we need to go ahead. I was hoping that we could get in quickly...just keep moving along so that we can get through this and get him recovered and moving again. On Friday they called to tell me that Sam's surgery was scheduled for December 7th, the day after his 10th birthday. I don't know what was bothering more, waiting and worrying for two more months or the fact that having major hip surgery is a really crappy way to celebrate your birthday.

I requested a particular anesthesiologist to work with Sam and asked for a consult with him and Sam's critical care pulmonolgist. I asked that Sam be considered if there were a cancellation which doesn't often happen in the case of a 6-8 hour surgery but I at least put it out there. My mom has already signed on to help me with Sam when he comes home, God love that woman!!! I have Ben and Danielle assigned to researching and coming up with ways to entertain Sam for two months as he lays in bed. My sister has already begun to do some preliminary baking to help me have easy to prepare frozen items that fit into Sam's SCD diet. Sam loved her blueberry pancakes, honey muffins and bread all prepared with coconut flour. My mother-in-law is preparing to make some of Jeff's favorite meals for the family. My sister in-law has offered to take on some of my volunteer positions at my daughter's school so our family meets the volunteer hour requirement. My brother will be transporting Danielle to her sporting events and cheering her on in my absence. A family from our church will be letting us use a hospital bed that they had purchased but are currently not using. Our school district is working with us to help keep Sam connected with his class and allow them to interact with him through Skype. Family and friends are offering help and praying....and did you read this paragraph....blessings abound.

My heart still hurts for Sam but I have drawn encouragement from the many messages I have received, the help offered and the prayers of comfort. Thanks for helping me come up with some wonderful passages and quotation to end this post!

"Father, if Thou wilt, let this chalice pass from Me, but yet not My will, but Thine be done".

Daniel 2:20 Blessed be the name of God forever and ever, for he alone has all wisdom and all power. World events are under his control.

"The strongest oak tree of the forest is not the one that is protected from the storm and hidden from the sun. It is the one that stands in the open where it is compelled to struggle for its existence against the winds and the rains and the scorching sun."- Napoleon Hill

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