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.

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!"

Hoping, Wishing & Praying

These three words encompass our answer to what is next for Braeden. We hope that the surgery takes, we wish that no more surgeries have to come and we pray (along with many other people) throughout this whole process.

The doctor was pretty positive that Braeden's surgery worked because he was able to get Braeden's feet up to 10 degrees, which is ideal. However, there is still that slim chance that the surgery did not take and we are hoping, wishing and praying that this will not be the case.

We hope, wish and pray that by the end of 6 weeks in casts, Braeden will be put into either braces with a bar (aka: Mitchell braces) or clam shell braces (what he had after his first surgery) to hold his feet in place. Kendall and I are wanting the Mitchell braces (though they're more expensive) because they give Braeden a little more mobility with his knees. I'm not sure how long the braces will be on for, but from what I've read about atypical club feet, my guess is that he will be in them full time, and then just while he sleeps until he's around 4.

Lastly, we are hoping, wishing and praying that he will not have to go through another surgery. In Braeden's club foot case there is a higher chance of re-occurrence around the age of 2 and the only option would be for surgery at that point in time.

All that being said, Braeden is still doing great. He loves looking at his toes in curiosity and grabs at the ends of the casts periodically. And maybe even eats the cotton from it. Yuck! Good thing cotton is digestible... Sometimes at this age, they tend not to sleep well because they love to wake up in the middle of the night and play. At first I thought it was his teeth, or pain or muscle spasms post-surgery before I realized the little guy just wants to be up and have us playing with him. We are just thankful that the change in sleep patterns is due to a phase he is going through and not because of pain.    

Quick Update (Sort of)

It is the morning after Braeden's surgery and I have to say I am impressed with my little boy. Due to all the comings and goings of a hospital room, the longest he was able to sleep overnight was 4 hours straight, which is pretty good. God bless pain medication!

Braeden did so well the morning before surgery too, even though he was starving because he had to fast. Surgery itself went really well - 4 hours long with casting, an hour longer than expected because there were additional cuts needed in his feet. The doctor also said that when he looked at where he cut the achilles tendons last time, the tendons had tightened up so much that it did not even look like it was severed before! However, the good news is that the doctor was able to get the flex in Braeden's feet that he wanted to and hopefully we won't need to do another surgery for awhile (maybe ever).

It took Braeden an hour to wake up after surgery before we met him in the recovery room, but he wouldn't settle for two hours. I tried breast feeding but he just didn't have the energy to suck, so we decided to give him sugar water, which he took. He was pretty gassy, so we gave him gripe water and that settled him a little. The doctor said with the morphine drip and other various pain medications, Braeden should settle in recovery, but if he didn't then it most likely meant that the casts were on too tight (apparently this is more common than we first realized). In the end, we had to split the casts-AGAIN! Luckily, this time it did not take 6 hours to figure that out. 

Right now, Braeden is fast asleep and we are trying hard to elevate and ice his feet when we can. He is such an active baby so it makes this part really fun :) 

Assiduous.

It is Tuesday and I'm antsy. One of the reasons for being antsy is I am anticipating the mad rush of traveling somewhere for Braeden's appointment. Before I was pregnant with Braeden, I was a travel studies coordinator at a university where a team of us worked hard to plan 2 month travel terms to Europe and Asia for packs of 20-30 students. The last two weeks of preparation before boarding the plane was an intense whirlwind where I felt I could not relax until take off. These intense feelings seem to have crossed over with leaving for Braeden's appointments. Ever since Braeden has been 3 weeks old, we have driven to appointments in other cities almost every week. However, this week there is nothing, absolutely nothing. I'm not driving in a car for longer than an hour, I'm not frantically rushing around the house washing the dishes, doing the laundry, packing, cleaning, etc., doing whatever I need to do to prepare us for leaving.

I am staying put.

But staying put is weird. It is uncomfortable. So much so that I want to keep myself busy.

Staying put has showed me that this club feet thing is all consuming. Most of my waking hours are dedicated to Braeden's feet. Currently, we are trying to stretch them at least 3-4 times a day for 30 seconds so that there is less chance of regression. Last week was about trying to put the splints on and making sure that they do not pinch his legs. This week is calling the doctor because the braces are too small for him and discussing the next plan to implement. If someone asked me what advice I would give to the busy parent(s) of a club foot baby it would be 4 things: laugh, reflect, give space to think about other things and staying positive. Laughing because it releases so many positive endorphins and because laughing is just great for the soul. Reflecting because it helps you heal and it allows you to clear your head. Giving space to think about other things helps one feel like you are not always engrossed with the subject club feet. Lastly, staying positive because sometimes that silver lining in the cloud is the only thing that keeps you afloat that week.

Parental Clubfeet Guilt Club

Someone told me once that "you are your own worst critic." I believed it when I heard the saying and I believe it even more now that I am a mother. At our second ultrasound, the technician told us that Braeden was going to have clubbed feet. After I heard that diagnosis, it took me a millisecond to realize that I had started to blame myself for his deformed feet and quickly stuffed those feelings away because for one, I didn't want to deal with them and two why should I feel guilty for something that is fixable. But from time to time, I would say and think things like: "I never took my vitamins that is why he has clubfeet", "I sat too long and squished his feet", "I should have known and did something about it", "I should-a", "I would-a", "I could-a." The guilt was starting to become overwhelming until one day I stepped into the doctor's office and she asked me if everything was okay and I just burst into tears.

Before we met with my GP that day, we had an appointment with the orthopaedic surgeon and I thought I was handling everything perfectly. I read the 8x12 booklet her secretary gave me on the Ponsetti method, I'd done my research, asked the questions that most parents would ask and I was ready to take on this challenge. However, I refused to recognize that there are strong emotions attached to hearing that your baby will not be perfect.

In hindsight and reading other parents' experiences with club feet, guilt is part of the club feet process and not allowing yourself to work through and feel these emotions stunts the acceptance of the process. As a parent (or a society influenced ideal), you envision and even expect that your own will be perfect and nothing will go wrong.  For me, having to grieve the loss of the "perfect and normal baby" was difficult and also difficult for others to understand because after all, it was only clubfeet.

After calming down from my surprising emotional outburst at the doctor's office, the doctor recommended that I talk about how I was doing with those that were closest to me no matter how stupid or insignificant my feelings may feel. She also said that not talking about my guilt could lead to depression and scared me enough to let down my walls and talk. As I started reflecting and talking about the guilt with friends and family it was shocking how much talking helped. Thoughts like these can be easily be seen as ridiculous and/or crazy, but you really can't help thinking them. Saying these out loud and vetting them through those around you helps you see the truth (or the non-truth in this case). Plus surrounding yourself with a strong and loving community is like gifting yourself with talk therapy!

The Pain of Expectation

I wanted to begin blogging about our experience with club feet when our son got his first casts, but that was 2 1/2 months ago. Oops! But as the saying goes: "It is better late than never".

Our story begins at the second ultrasound. The doctor determined that Braeden would have club feet, so my husband and I researched the best methods to correct his feet. Like all good researchers, we started on google! We stumbled upon the Ponsetti method. We found a doctor that was experienced in the method and when Braeden was 3 weeks old we started the first phase of the Ponsetti method - casting. Each casting session was exciting because we saw movement in both feet. My husband and I thought that everything was going so well that we just wanted to get the surgery over with, and then braces and wahlah everything would magically be perfect! Unfortunately, this is not the case.

Last Tuesday, we were at the IWK (Children's Hospital) for a follow up appointment after the surgery. By this point, my husband and I were excited about the results of the surgery. We were expecting that Braeden would be in the cheaper braces and the road to finishing the clubbed feet process was so close we could smell it. However, when the casts came off the doctor explained that the surgery didn't take as good as he would have liked, partly because Braeden has an atypical form of club feet. This means that his feet are smaller and pointed down further than they should be and he will require more intensive treatment, potentially another surgery and more expensive braces. Something both of us were not anticipating. The surgery was difficult on me because I tend to foresee the worst and there is something about knowing that your little one will be under going anaesthesia that tugs at your heart, so to hear that potentially another surgery would be more likely was devastating. I know that everything is going to be fine and this is just a blip on the radar in the grand scheme of things, but currently these are the emotions I need to work through and want to put out there. Hence, the reason for this blog. 

We are travelling to the IWK sometime within the next two weeks for another check in and to get his braces on. I cannot wait to trade in the splints for braces because adjusting his feet into these splints have not been my idea of fun!