Friday, April 8, 2011

One Day At A Time...But Can We Skip Today???

Today I took Sam in for a follow up appointment with his surgeon. I dropped Sam off at the entrance with his walker and then proceeded to park the car. I received an interesting look from a couple who watched us. I could only assume what they were thinking but the expression was one of surprise, maybe concern. Did they think I was dropping him off and leaving him there alone? Did they think Sam would freak out when I went to park the car? Please tell me they didn't think he was going to dart off into the road (I would think the walker kinda explained that situation)? Or were they surprised that Sam could do this or were they thinking I was a bad parent because I knew he could? Whatever they thought it again made me go to that place in my mind where I try to deal with other peoples perceptions of my child.

I shake it off and head into the clinic with Sam. Sam sees a man walking out and says "Hello Man!", the man immediately smiles and says "Hello". I smile at Sam watching him enjoy the interaction. As we approach the elevator an older man walks out, Sam says "Hello, Man!" This man avoids looking at Sam and hurries past him. Sam calls to him again but the man doesn't turn around. My heart breaks a little...the elevator door closes and I tell Sam that some people are in a hurry to get through life and forget to reach out to others but I'm happy he does. Sam smiles...he doesn't judge the man that didn't respond as I do, he never holds a grudge.

We check in and they send us in for an x-ray. Since Sam is walking and he hates to lie on the table they decide to take one standing up. They work with him to have him stand up straight with his feet positioned forward which seems a little uncomfortable for Sam but he cooperates and then they ask if it would be okay to lower his pants. Sam sorta drew the line in the sand there. I mean in his world, either your pants are up or they are down. He's not the kind of guy who is going to walk around with the crotch of his pants hanging down by his knees. I guess all my teaching on wearing your clothes properly and not letting other people touch you kinda gets blown out of the water in medical situations. So, I pulled his pants down and said "Sam, it's okay Mom will pull them back up in a minute." Thankfully it only took one try to get a good x-ray.

A good x-ray...meaning a clear image of Sam's hips...but not necessarily an image that you or I would look at and say those are great looking hips. I'm going to request a copy of the x-ray and will share that in a later post.

We were then escorted into a room and the new x-ray was up on the screen along with Sam's previous x-rays. The new view seemed to highlight the difference in the femur position of the left hip but it also showed an even flatter head. After all the research I have done on hip dysplasia and Perthes and all the beautiful diagrams of normal hips I have looked at...even I can see that Sam's hips don't look like any of the pretty pictures. All the hardware still glared bright white on the screen, again causing me to cringe a little bit. Sam's femur on the right side is not angled like the corrected left side, it is straighter and the hip socket is shallow. The left side has a better looking socket and a better angle but you can't help but notice the missing ball top.

I began to come to the realization that this twist in the journey is far from over. I didn't expect to see a beautiful round ball at the top of the femur but I also didn't expect to see further bone loss.

Sam has had a lot of twists in his journey that have brought us into different areas of Children's Hospital...areas I had hoped to never visit. The first area was Cardiology. Sam was born with an ASD or hole in his heart. When he didn't make progress closing the hole on his own he was scheduled for open heart surgery when he turned 3. With the help of a nutritional supplement and the grace of God...Sam's hole closed on it's own shortly before his 3rd birthday allowing us to bypass the surgery. Thank you, Lord.

The next area Sam decided to check out was the feeding/swallow/sleeping clinic. Sam didn't chew, his liquids had to be thickened or he would aspirate into his lungs and his tongue protruded more than normal. During his first swallow study I watched the thin liquid drop into his lungs, I watched him swallow pieces of food whole, I saw a delay in his gag reflex, a delay in his swallowing process and then I watched them put Sam's tongue in his mouth, close his lips and at the same time close his airway. Sam could not put his tongue in his mouth, close his mouth and breathe.

The swallow study moved into a sleep study which showed that Sam had reflux and severe sleep apnea because his tonsils and adenoids uninfected took up 70% of his airway and then there was that tongue. My Mom came with me to the follow up appointment to the swallow study. We were told Sam had dysphagia (a late swallow), all of his liquids needed to be thickened to keep him from aspirating, he would need extensive oral motor work...but that was the good news. The thing they were really worried about was Sam's breathing issue. We were told if this continued and his mid face did not grow out enough they would have to surgically assist. This is when we learned about distraction osteogenesis. I watched my mother grow pale as they described the medical procedure which included peeling the face down, screws, turning pins and numerous procedures. Sometime during the explanation I simply went numb and stared at the little baby in my arms watching him smile.

After this appointment was the follow up to the sleep study. At this appointment Sam's ENT announced that Sam would become a pulmonary cripple if we did not have his tonsils and adenoids removed immediately. Harsh, YES, and again I found myself in the parking structure of Children's Hospital crying my eyes out while Sam slept in his car seat in the back.

Sam had his tonsils and adenoids removed and has since had his adenoids shaved twice. His breathing improved and so did my sleep cycle. He went in for his follow up swallow/sleep study and my Mom and I rejoiced when we saw them put Sam's tongue in his mouth, close his lips and this time the airway remained open. During his sleep study his oxygen stats stayed up and his sleep apnea disappeared. Thank you, Lord!

Due to Sam's respiratory and immune issues we still hang out in Pulmonary, I'm hoping to graduate from that area someday but I'm not holding my breath...pun intended.

We also frequent Audiology, ENT and Speech appears to be a long term commitment.

And now Orthopedic. Today I sat in the appointment as Sam's surgeon again explained the advanced stage Sam's Perthes is in. He explained that the surgery was successful to deal with the primary diagnosis of hip dysplasia but Perthes...Perthes is a nasty disease, Perthes is a rare disease and Perthes is different in every person who gets it. Sam will continue to have good and bad days, he will continue to have pain, his gait is probably forever changed, the Perthes may have now affected his growth plate and cut off the blood supply to the growth plate, the ball may not grow back or grow back enough, he may still end up needing a hip replacement....are you getting the gist of this appointment.

Sam's reaction...he hugged his surgeon and thanked him. Were we in the same appointment?

Or is Sam again trying to teach me that today is still a good day, no matter what happens, no matter who we see, no matter what we hear...the fact that we the important part...the rest is just details.

Continued prayers for Sam's growth plate, bone regrowth, improved gait, less pain and thanking God that Sam is Sam!


  1. aww I wish I could hug him! I remember the days when Chloe would say "Thank you" to the Nurse or Doctor after having to be held down to have her port accessed for a chemo treatment. It was over, she was done and "Thank you" and smiles when we were on our way out. It always made me put things into perspective. Hugs to you guys!

  2. I love Sam's joyful spirit. He seems to find a way to see the positive in everything.

    I walked through Wal Mart on the day before Christmas one year with my 53-year-old aunt with ds. She smiled at EVERY person we passed and wished them a Merry Christmas, completely unaware of the rush and hurry all around her. Each person smiled back and returned her greeting, moving on with their shopping with a lighter heart. Gabe gets the same reaction and tends to bring smiles to all of the faces we pass. Only once did someone not respond. As in Sam's case, Gabe was ignored and the woman moved far away from us on the other side of an aisle and hurried by. Thankfully, we don't have to see that too often. Thankfully, our boys are very bright lights in an all too dreary world.

  3. Prayers for bone regrowth and less pain.....and gratitude for a perfect spirit coming up!

    You sound as though you know your way around a hospital almost as well as we do. sigh.

    Hey. On Monday I'm going to be posting about a homeschooling decision I need to make. I could use your advice. :)

    Tammy and Parker