Thursday, 27 June 2013

Medical Miracle

Before heading out to Braeden's appointment yesterday, while waiting to pay for our lunch, an older lady looks at Braeden, then looks at me and says: "My grandson had clubbed feet. After 10 hours of surgery and then casts, he is fine now. It really was a medical miracle!" I look at her, nod and smile. Half believing it, and the other half thinking "We will see with my little guy..."  Braeden's feet have been atypical from the beginning.  Hence, the hesitation.

However, I am glad to say that Braeden's appointment yesterday went "normal-ish." I say "normal-ish" because the doctor that regularly sees Braeden was on holidays so we met one of his colleagues who was just as knowledgeable and just as good a doctor. Our original doctor suggested that Braeden be put into splints instead of boots and bars (aka: Mitchell braces or Ponseti AFO braces) because he believes that his feet will find it harder to regress. As Braeden continues to grow, we will know if the splints are working by whether or not they are keeping his feet where they are supposed to be.

What I found surprising was the drastic change in Braeden's feet when the orthopaedic technician removed Braeden's casts.

Before First Surgery (August 2012)
After Second Surgery (June 2013)
   
Looking at pictures of his feet like the ones above, puts into perspective how much the medical world has progressed. It was only 10-15 years ago that club feet were treated by breaking the bones of the feet and then casting them. Now, serial casting, cutting certain tendons and then re-casting are used to correct the feet. Thankfully, the current treatments can be less invasive and waaayyyy less painful. So really, the lady was right, treating club feet by surgery and casting is a medical miracle.






Thursday, 20 June 2013

Patience is NOT my virtue!

I must admit I am an impatient person. I am a person that is always about get things done and a get it over with type of person. As a mother, low and behold, I am still impatient. But the worst part is I recognize it even more. Something about motherhood brings out the best and worst in me. I have been assured that most mothers feel this way so no worries about confirming these thoughts!

The impatient mother came out today when I sat and thought about Braeden's upcoming appointment (or lack thereof). My husband and I realized a couple of days ago that the children's hospital had not given us Braeden's next appointment date via a phone call or a letter. Puzzled about this situation, I decided to call the children's hospital on Tuesday only to find out that someone had forgotten to tell the scheduling department that my son had a follow-up appointment. She also informed me that Braeden's orthopaedic doctor will not be in for the next 2 weeks. The scheduling lady was nice and apologized about the mix up and told me that she would call about what the doctor wants to do about Braeden's appointment. During the phone call, I was gracious and forgiving.

That was 2 days ago!

As I watched Braeden drag himself across the kitchen floor today, suddenly the impatient bear (mixed with a tad bit of anger) reared its ugly head and the only PG thoughts that I can express online were: "I have waited almost 6 weeks for these stupid, gross-looking casts to come off of Braeden's legs and they forgot to make a follow-up appointment!!  Also, 'nice' scheduling lady hasn't called back yet and I might have to wait another 3 weeks until the casts come off!"  By this time, Braeden has scooted at my feet, one casted leg behind him and the other in front with his big brown eyes begging me to pick him up. Of course, I pick him up because who can resist those huge brown eyes. Looking back at that moment, my impatience and tad bit of anger stems from two things. The first is yearning to experience a sense of normalcy. This year has been far from normal and not being able to experience the excitement of the crawling, standing, and walking milestones has been heartbreaking. Yes, I know that they will come and yes, I am really enjoying the fact that I am still  faster than Braeden, but that still does not stop the impatient yearning of normalcy.
The second stem is the desire to move on to the next chapter of club feet. In past blogs, I wrote about how this process was suppose to be simple - 6 to 8 weeks of casting, tenotomy, braces and walah this baby is healed! But the clubfeet journey has not been as simple as all the hospital literature said it would be. It has increasingly become complex and I so badly just want to get to the next phase of this journey.

Ultimately, I want to be able to wear a t-shirt that states: "Clubfeet: I've been there, done that!"




Tuesday, 11 June 2013

Are His Legs Broken?

It never ceases to amaze me what type of looks, questions and statements you get from others when you go out somewhere with a baby who wears casts.The looks go from concern to I get it. The top three questions are always: "What happened to his legs?", "How did he break them?" or "Club feet?"
Followed by the top three statements: "Poor baby!", "My grandmothers, uncles child had clubfeet" and "He'll be fine." I keep telling my husband that I can't get out of a store without  someone asking what is wrong with Braeden or needing to stay and listen to a story about someone else's experience with club feet."

It is remarkable that so many people recognize the situation, have a story to share, and can connect with me through this experience. It is also equally remarkable that half the population that I run into have never heard of club feet. In both situations, I figure that this is my chance to connect, educate and tell people a part of our story.

Wednesday, 5 June 2013

Happy Misunderstandings

Phone call to the hospital last Monday:

Us: Hi! We have an appointment tomorrow for Braeden who had surgery two weeks ago and we were just up there so we were wondering what the point of this appointment is and if we really need to go. We also need to know ASAP because if we do need to go we would have to leave this afternoon.

Nurse: Hold on. Let me see if I can talk with the doctor about your situation because your liaison nurse is sick today. 

Us: Okay (Hold for 5 minutes)

Nurse: I found the doctor and he said that you do have to come because he would like to see Braeden's stitches and put his feet up 5 degrees. 

Us: Oookkkaayy.... See you tomorrow. Thank for letting us know. [Hang up and both of us look at each other, ask: does that mean Braeden gets his casts off?  Shrug and do a mad rush of packing]

Oh what? 

Checking out the stitches? Does that mean new casts? Yep! 

We were shocked! I was happy because Braeden's casts were getting pretty gross :)

Our appointment this past week meant that we were able to see Braeden's wounds and to re-cast his feet into place. When they took the casts off, it was neat to see the scars. They are in the form of a 'Z' which is basically what Harry Potter had on his forehead! The doctor said that the scars are healing really well, no sign of infection and the feet look like they have the ability to move into the ideal position. Wahoo!

The worst part of the appointment was watching Braeden cry and shake in pain as they steadied the feet to put them in casts. My husband and I both knew that this had to happen or the surgery wouldn't take. As a mother, I think I have done well up to this point with Braeden's surgeries. Yes, I did worry and yes, I held it together as they took Braeden to the surgery room, but seeing him in pain almost made me break down. This emotion took me by surprise. Luckily, the orthotech was able to comfort me by saying that once the new casts were in place it would be easier for Braeden and that he would get used to the casts again.

It has been a week since the appointment and the orthotech was right, Braeden is used to the casts. He bangs those casted legs against the floor, his crib, the wall like it's nothing. We also found out that the lack of sleep was probably due to Braeden getting muscle spasms. The doctor explained that during the day, Braeden most likely does not feel the muscle spasms because he is busy playing or being held, but once things settle at night he would notice them more. Like I said in previous blogs, there is nothing we can do for muscle spasms, but the doctor suggested that Tylenol or Advil would be good to give him before he goes to bed to take the edge off. Ever since we have done that Braeden has gone to bed and is now back to his regular sleep routine. Yeah! Wahoo! So very excited!

The next step is in 3 weeks when we will be heading to the hospital again to remove the casts and hopefully get splints again or braces. However, it is dependant on how well Braeden's feet have healed. Wish us luck!