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!"

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!

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.    

Resilency

It has been a long time since I've written on the blog and my excuse is that I have been travelling for a month visiting family, so sitting and reflecting was far from reality. However, during that time it was awesome seeing Braeden interact with grandparents, aunts, uncles, and cousins. He definitely brought joy wherever he went with that killer smile.

Today, I've been thinking and looking back at pictures of his 6 month old life and realized that he has endured so much already. He has had serial casting done, an ear infection, and has undergone surgery. It almost sounds like old grandma complaints "My hip is hurting, my bunions are infected!" and he is not even 80 years old yet. In all seriousness though, he is a trooper! Someone recently told me that she believes that children that undergo medical experiences tend to have the personality that can hack the annoying doctor's appointments, the painful surgeries and the ear infections. This has to be Braeden's personality. He is so laid back, fairly easy going, smiles after the appointments, the foot stretching, and also sleeps well. Cross my fingers that he continues this personality traits as he gets older.

To commemorate Braeden's upcoming appointment, below are a few pictures of how much his feet have changed.

Braeden 5 days old. Picture by Shannon May Photography

Braeden's feet a month into casting

Braeden's feet after surgery and 3 weeks of casting.
This is how his feet are currently.

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.

Casting 101

Braeden's casts were wrapped at a hospital fracture clinic a few hours away from where we live, so we had to make sure that Braeden was as comfortable as possible before and after his casting appointments. Here are some tips, things to expect, things I brought and things I wish I knew going into the casting appointments, especially the first on.

1) I wish I knew that some (if not all) babies scream the entire time they are being casted. Braeden screamed the entire time the first time he was casted! Luckily, I'm not one of those mothers who gets embarrassed by her screaming baby. The benefit is that after screaming the whole time, he was KO'd for quite a few hours.

2) Some babies are strong enough to break their casts. Yep! He did that too and not just once, but three times. The first time he was casted, Braeden cracked his casts where the knee bent 30 minutes after his appointment, so we had to rush back to the fracture clinic to reinforce it.

3) At Braeden's first appointment, I wish I had brought a soother or something for him to suck on.  It helps to soothe them while they are on the table. We also allowed him to suck on our finger during casting sessions and that helped too. On a side note, I was one of those parents who was somewhat adamant on not giving their child a soother, but that stopped the first night the casts were on. The first two nights the casts were on were the toughest for us and Braeden. He would wake up almost every hour. I finally gave into the God-given gift of plastic and the sound of silence had never felt as wonderful as it did that night as it was the only thing that allowed him to get back to sleep.

4) Don't use clothing that you don't want casting bits on. I always carry at least two to three onesies in the diaper bag anyway, but I made sure to have lots for casting so that Braeden had a change of clothes after casting. Like I said earlier, casting bits get everywhere.

5) Bring wash cloths and a plastic or wet bag. After the casting is finished, the baby from the waist down has plaster everywhere and to wipe it up the ortho tech gave me the roughest hospital cloth ever. It was like sandpaper! So the next week, I made a note on my phone to bring a soft wash cloth to wipe the plaster bits away. Plaster bits sometimes get in the butt crack and if not wiped off good they get angry! The bag is to put the wash cloth and the onesie in.

6) Urine and poop get on the casts. It is gross and you do your best to wipe it off, but you are also glad that
casts are changed once a week.

7) We changed and fed Braeden before we went into our appointments so that he was as comfortable as possible during them. Sometimes that meant he peed or pooped on the table. Makes for good stories later on.

8) The first time holding your baby after casting could be awkward because they are heavier and you also feel like you don't know how to hold them. You adjust to this awkward moment pretty quickly.

9) Know that friends might be scared or find it hard to hold your baby after he or she has the casts because they also don't want to hurt them. I had to assure some of our friends that holding him normally is fine and that they weren't hurting him.

10) And last but not least, speak up! Braeden wears thick cloth diapers, and when the ortho tech was casting him I had to remind him a couple of times during the casting period to not cast so high up on the leg in order for his diaper to fit. Also, if you have any questions (whether you think the questions are dumb or not) about the casts, don't hesitate to ask even if you think they are too busy. Asking any questions helps to understand the process better and eases your worries.