Braeden's fevers have been at their worst the past couple months. He has had at least 4 fevers, 2-3 ER visits, lots of emails back and forth from our nurse practitioner. We have seen the orthopaedic surgeon, the allergist and paediatrician. Pretty busy couple months for the little guy!
Since we have just gone through the gauntlet of doctors, we had to re-learn that our son is an anomaly. I mean all parents think that about their own child/children right?!
But mine really is :)
The orthopaedic surgeon reminded us that Braeden has atypical, atypical club feet and the fact that he was born without any ACLs in his legs also makes him atypical. The surgeon assured us the great news that Braeden's feet are not turning in. The bad news is that the ligaments at the back of his feet are extremely tight, which is likely related to his calf muscles being atrophied. This combination makes it more difficult for Braeden to run normally. Hopefully with some stretches and exercises we can help strengthen his legs and be able to make them function properly.
The paediatrician's take on Braeden's condition was "it is mysterious." The paediatrician was extremely thorough in her quest of finding out what is going on with Braeden's fevers, side pains and joint pains. She made us feel like she was thinking about all kinds of avenues on what is happening.
In the end, both the orthopaedic surgeon and paediatrician were on the same page and have referred Braeden to a paediatric rheumatologist. A rheumatologist specializes in evaluating and treating the pain in the joints, muscles, bones, and tendons. Things like arthritis, autoimmune disorders, prolonged fevers and unexplained symptoms such as rashes, joint swelling etc. are also what they specialize in.
As we wait for the next specialist appointment, we will continue to document everything related to the fevers. Braeden has been such a trooper through this entire ordeal and when the fevers are not taking his energy away he is still playing, climbing trees and making us laugh with his amazing imagination. We are hoping, wishing, praying for great outcomes and an amazing rheumatologist who can give us answers. So really we want Dr. House, but one with better bedside manners!
Friday, 4 November 2016
Monday, 19 September 2016
Hello again ER!
I am home from the ER once again. The third time in the past month. Braeden has been sick a lot lately and we have no idea what is happening. The past 4-6 months or so he has been having fevers quite regularly. I can pinpoint when he will get his fevers - between the 12th - 15th of every month. This month the fever began on the 16th.
We were hoping and praying that stronger antibiotics had cured what we thought was strep throat. Unfortunately, this may not be the case.
A friend asked me if not knowing what is happening with my child has been hard on my head and heart. My initial response was no, its just frustrating not knowing what is happening. I shrugged it off like it was nothing. Later, when I went home and had time to think about that question, tears welled up and I said to myself: Are you kidding? Of course, it is hard on my head and heart. I pride myself on not knowing how I am really feeling at any moment... Ha! No I don't! That's just a part of myself that wrecks my soul if I don't take time to figure things out.
I realize as a mother with a child who is constantly in need of medical attention that it is soooo incredibly easy to forget to take care of yourself because as a mother or a father we tend to put our kids' needs above our own and secondly, as parents we are rarely asked how we are doing with the situation. I am not putting blame on anyone 'cause I am at fault here too. As people we are conscious of what is immediate and the situation that is directly affecting a person. We seldom consider how a situation affects those indirectly.
These (for me at least) don't help in my awareness of taking care of myself. It just exacerbates the separation of my emotions and mind. Although, all of this sucks and I cannot understand why life is happening the way it is for my son. I am learning a ton about being a medical parent and what it means to always be vigilant in taking care of yourself. And most importantly how taking care of yourself is not just important for you, but to the little boy who needs you when his fever returns.
We were hoping and praying that stronger antibiotics had cured what we thought was strep throat. Unfortunately, this may not be the case.
A friend asked me if not knowing what is happening with my child has been hard on my head and heart. My initial response was no, its just frustrating not knowing what is happening. I shrugged it off like it was nothing. Later, when I went home and had time to think about that question, tears welled up and I said to myself: Are you kidding? Of course, it is hard on my head and heart. I pride myself on not knowing how I am really feeling at any moment... Ha! No I don't! That's just a part of myself that wrecks my soul if I don't take time to figure things out.
I realize as a mother with a child who is constantly in need of medical attention that it is soooo incredibly easy to forget to take care of yourself because as a mother or a father we tend to put our kids' needs above our own and secondly, as parents we are rarely asked how we are doing with the situation. I am not putting blame on anyone 'cause I am at fault here too. As people we are conscious of what is immediate and the situation that is directly affecting a person. We seldom consider how a situation affects those indirectly.
These (for me at least) don't help in my awareness of taking care of myself. It just exacerbates the separation of my emotions and mind. Although, all of this sucks and I cannot understand why life is happening the way it is for my son. I am learning a ton about being a medical parent and what it means to always be vigilant in taking care of yourself. And most importantly how taking care of yourself is not just important for you, but to the little boy who needs you when his fever returns.
Tuesday, 6 September 2016
No. Really?
In a long series of events and circumstances, I literally was made to come back and write on this blog. To be honest, I knew one day this would have to happen.... maybe? Sort of? And hopefully not. It takes times to write these things and now that I'm a mother of two and working it just gets harder to put that time aside and kids are a great excuse for avoiding time consuming things :)
The last 2 by 4 that made me return was a beautiful drawing done by our friend who lives on the other side of the country. I haven't heard from him in a long time. At the university that my husband works at are many talented students who write poetry, play music, paint and draw (go figure 'cause this isn't even an art school!). Anyway, I try and acquire a piece of art from all the artists and this one happened to come in the mail the same week I've been thinking of starting to post. After an already emotional week, my husband opens the envelope, reads the letter and shows me the artwork.
I burst into tears! My resurfacing begins.
Tuesday, 17 September 2013
The New Normal
It has been difficult to keep this process of blogging about Braeden's feet going when I feel like there is nothing new to write about. The length between visits to the doctor have become longer and Braeden's feet are where they should be. I look back at the past 14 months and the issue of club feet seems almost non-existent. The only tangible reminder of club feet are the zig-zag scares on the back of Braeden's legs. It is pretty exciting and also weird when one comes to this point in a journey. I feel like I have no idea what to do with myself sometimes. No gearing up for a long drive, no rushing around to get things done before a trip, no anticipation trying to figure out whether or not another surgery is around the corner. The new normal almost feels boring. Then you realize that the hyped up anticipation is not normal and continuing at that pace is exhausting. It is like coming off an amusement ride and wanting to get on another one. I mean amusements rides are fun, but at the end of the day the thrill needs to subside. You need to normalize to gain strength for the next thing life hits you with. So I think I need to be more thankful for normalcy and I'll let you know how that goes!
Tuesday, 23 July 2013
The Good News We've Been Waiting For (Not the Nameless Royal Baby!)
It has been a while since I've written and I realize I have a lot to write about. However, I decided that this blog will focus on the appointment we just had because it was such good news. We finally saw Braeden's orthopaedic surgeon and he looked at Braeden's feet with excitement (Funny what makes people happy!). The doctor said that Braeden's feet look bigger which is a good sign because the tendons are not holding his feet back from growing. He also said that Braeden's feet are at the right flexion (in medical terms - 10 degrees dorsiflexion) in order to walk. Yeah!
The next step is to ensure that Braeden's feet do not go back to their original position. To help prevent relapse from happening, the surgeon has decided to put Braeden in custom-made splints that he wears during his naps and at night until he is 4 years old. I don't know if the surgeon is trying (or experimenting) with my son's situation, but apparently these splints are rare. Most children get the boots and the bar (aka: Mitchell braces) after this type of surgery and have great results, yet the doctor believes that in Braeden's situation the splints will work better. When we were talking with a resident during our appointment, she said that she wasn't aware of any other clinic that uses these custom splints like this.
Looking at the statistics online, atypical clubfeet has a high re-occurrence rate because (as the doctor says) we are fighting against genetics and the feet want to pull back in. Making sure that we stretch his feet twice a day and ensure that the splints are properly used will help to reprogram the tendons and muscles where they are supposed to be. It is interesting watching his feet trying to pull in, especially when Braeden is just sitting on the floor playing or when he is in his jolly jumper. Undeterred by this, Braeden is scooching everywhere and getting into everything like he is supposed to at this age. Also, he is already trying to stand up in his crib and everywhere else he can. I can't believe how resilient babies are! It took Braeden very little time to re-learn scootching on his bum and trying to stand up. Lets face it, as we get older we become wimps! If I had a major surgery like him I'd be the biggest whiner ever.
The next step is to ensure that Braeden's feet do not go back to their original position. To help prevent relapse from happening, the surgeon has decided to put Braeden in custom-made splints that he wears during his naps and at night until he is 4 years old. I don't know if the surgeon is trying (or experimenting) with my son's situation, but apparently these splints are rare. Most children get the boots and the bar (aka: Mitchell braces) after this type of surgery and have great results, yet the doctor believes that in Braeden's situation the splints will work better. When we were talking with a resident during our appointment, she said that she wasn't aware of any other clinic that uses these custom splints like this.
Looking at the statistics online, atypical clubfeet has a high re-occurrence rate because (as the doctor says) we are fighting against genetics and the feet want to pull back in. Making sure that we stretch his feet twice a day and ensure that the splints are properly used will help to reprogram the tendons and muscles where they are supposed to be. It is interesting watching his feet trying to pull in, especially when Braeden is just sitting on the floor playing or when he is in his jolly jumper. Undeterred by this, Braeden is scooching everywhere and getting into everything like he is supposed to at this age. Also, he is already trying to stand up in his crib and everywhere else he can. I can't believe how resilient babies are! It took Braeden very little time to re-learn scootching on his bum and trying to stand up. Lets face it, as we get older we become wimps! If I had a major surgery like him I'd be the biggest whiner ever.
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.
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.
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!"
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.
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!
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!
Monday, 27 May 2013
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.
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.
Friday, 24 May 2013
Whac-A-Mole
I have huge sympathy pains for mothers whose babies do not sleep through the night. This was our reality with Braeden the first few days after coming from the hospital. He was waking up every two hours screaming and crying, which is very rare for him (his sleep pattern is now slowly regulating). The anaesthesiologist explained that if the body has two pain areas, usually one pain area becomes worse than the other, meaning that Braeden could be experiencing massive amounts of pain in either his mouth because of teething or his feet because of the surgery. Or Braeden could be experiencing muscle spasms in his legs, which we can only wait out. As a parent, it is both difficult and frustrating to figure out what to do in these circumstances. Do we elevate his legs because he feels pressure? Does he need to breastfeed? Even though we just fed him solid foods an hour ago? Do we give him more pain medications? When do wean him off of pain meds? Does he want to be lying down even when he is screaming his head off?
Since Braeden can't communicate, it is hard to know what next steps are. We are always guessing, second guessing, trying anything we can to calm him down. In a way, it is normal for parents to feel like they are playing the game whac-a-mole when trying to comfort their child. Eyes darting back and forth, trying to figure out just the right thing to make the crying stop. But when the guessing game is exacerbated by the surgery, it can make it feel like you're playing three whac-a-mole games at the same time instead of just one.
As we come through these challenges, one week after surgery it's been a relief to see him slowly coming back to himself, laughing lots and swooning all the old ladies at the grocery store.
As we come through these challenges, one week after surgery it's been a relief to see him slowly coming back to himself, laughing lots and swooning all the old ladies at the grocery store.
Sunday, 19 May 2013
Day 2: Post Surgery
No one ever tells you that the second day of something is always the hardest! I experienced this after my mom passed away, after giving birth to Braeden and now Braeden's surgery. Man, I wish people would tell you these things!!
Anyhoo, Braeden had a pretty rough night last night. He woke up at least once an hour. The nurse said the second day is always the hardest because the morphine wears off and babies start cluing in that their feet are bound by heavy plaster. Miraculously, I felt like I was gifted with divine patience last night and was able to handle the hourly wake ups. If I was giving 'Dear Abby' advice about any child going through surgery it would be the same as when you gave birth to it - sleep when the baby sleeps.
Despite Braeden's lack of sleep pattern last night, I think he is doing absolutely amazing. Although his legs are bound up, he is still laughing and making cute faces. He is supposed to lie down on his back and elevate his legs as much as possible for a couple of days after surgery. Despite wanting to get up and interact more, he only whimpers when he is put down. On his tummy, he is still trying to move around like he has no casts. So watch out world, this baby is going to be super strong, he's a trooper!
Anyhoo, Braeden had a pretty rough night last night. He woke up at least once an hour. The nurse said the second day is always the hardest because the morphine wears off and babies start cluing in that their feet are bound by heavy plaster. Miraculously, I felt like I was gifted with divine patience last night and was able to handle the hourly wake ups. If I was giving 'Dear Abby' advice about any child going through surgery it would be the same as when you gave birth to it - sleep when the baby sleeps.
Despite Braeden's lack of sleep pattern last night, I think he is doing absolutely amazing. Although his legs are bound up, he is still laughing and making cute faces. He is supposed to lie down on his back and elevate his legs as much as possible for a couple of days after surgery. Despite wanting to get up and interact more, he only whimpers when he is put down. On his tummy, he is still trying to move around like he has no casts. So watch out world, this baby is going to be super strong, he's a trooper!
Friday, 17 May 2013
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 :)
Tuesday, 14 May 2013
Surgery Number Two
It has been a while since I have wrote a blog. For a while there I didn't know exactly what else to write during the waiting period between surgeries and now the excuse has been family circumstances. Now, I have a ton to write about :)
The next leg of the clubfeet journey is another surgery. A tenotomy (aka: achilles tendon) lengthening and loosening of some of the ligaments in his feet. Apparently, the poor guy will be under anaesthesia and the surgery is going to be around 3 hours long. To date, Braeden has been wearing braces at night (which he just grew out of) and we have tried to make a habit of stretching his feet 2-3 times daily to help keep his feet from regressing before surgery.
I have mixed emotions about Braeden's surgery. I am excited that his feet are going to be fixed, but it is mixed in with fear. With my mom passing away from cancer recently and seeing her in the hospital before and after she passed away, somehow I think my brain has equated hospital experiences with grief. I am also a little apprehensive that the surgery might not work and that getting his feet fixed might be more than meets the eye. Now, I know that some of my fear stems from these events being so close and really its about convincing myself that the two events are absolutely different. But you know how it is, you are your own worst convincer! However, I do have faith in our orthopaedic team because they have been so great at taking care of our situation thus far and have been good at communicating the reality of our situation even though it has been difficult for us to hear at times.
Until after surgery . . .
The next leg of the clubfeet journey is another surgery. A tenotomy (aka: achilles tendon) lengthening and loosening of some of the ligaments in his feet. Apparently, the poor guy will be under anaesthesia and the surgery is going to be around 3 hours long. To date, Braeden has been wearing braces at night (which he just grew out of) and we have tried to make a habit of stretching his feet 2-3 times daily to help keep his feet from regressing before surgery.
I have mixed emotions about Braeden's surgery. I am excited that his feet are going to be fixed, but it is mixed in with fear. With my mom passing away from cancer recently and seeing her in the hospital before and after she passed away, somehow I think my brain has equated hospital experiences with grief. I am also a little apprehensive that the surgery might not work and that getting his feet fixed might be more than meets the eye. Now, I know that some of my fear stems from these events being so close and really its about convincing myself that the two events are absolutely different. But you know how it is, you are your own worst convincer! However, I do have faith in our orthopaedic team because they have been so great at taking care of our situation thus far and have been good at communicating the reality of our situation even though it has been difficult for us to hear at times.
Until after surgery . . .
Wednesday, 16 January 2013
A Hopeful New Year
Braeden was a star patient today! With little to no crying
we were able to have new splints made. I am pretty sure that the orthopaedic
technician was excited that he didn’t have to hear Braeden scream during the
whole process! Getting a pair of splints made takes about an hour and a half.
It all starts with putting a cotton stocking over his leg, which gets covered
with a cotton wrap and then another stocking put over that. Essentially a
cotton wrap sandwich. Then the orthopedic technician (aka ortho tech) wraps fibreglass around the cotton wrap sandwich and somehow holds Braeden’s
wiggling leg and foot in position for 30 seconds to a minute until the fibreglass
dries. Then the whole process happens again
with the second leg. After both legs are finished the ortho tech cuts the casts
in half and lines them with a nice soft material for when Braeden’s wearing
them (and stylish Velcro straps to hold it all together).
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| Braeden's splints |
 |
| Braeden's splints open |
We are also very happy and relieved to report that Braeden’s
feet have not regressed. Wahoo! With the
help of the splints being worn at night and the diligent stretching that
Kendall and I have been doing, Braeden’s feet are staying where they are
supposed to. The doctor said that Braeden’s feet are growing (I was afraid they
weren’t) and since all things are going well, we do not have to venture the 5
hour drive to the children’s hospital for another 3 months. Our next
appointment will be a pre-op appointment to check on Braeden’s progress and talk
about the upcoming surgery in May.
Monday, 14 January 2013
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.
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.
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| Braeden 5 days old. Picture by Shannon May Photography |
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| Braeden's feet a month into casting |
 |
| Braeden's feet after surgery and 3 weeks of casting. This is how his feet are currently. |
Wednesday, 28 November 2012
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.
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.
Tuesday, 20 November 2012
Fighting the Inner Monster
Friends have been asking how I'm doing/feeling about the upcoming appointment at the children's hospital and my answers have varied which made me realize that this would make for a blog (I did think through this today, so don't worry, I won't upset your brains with pages and pages of verbal diarrhea!). To be honest, I'm going into it with low expectations, so in a sense thinking the worst. But only to hope for the best. The last appointment made me feel like I was hit by the disappoint truck. I really was excited to get the surgery over with, to see his feet look normal and to just move on to the next steps. I was anticipating moving forward, and although this seems like a blip on the radar screen it just feels like a gigantic hurdle - you know, the one that you tried with your awkward junior high legs and fell because you couldn't jump the hurdle right. On the other hand, I'm also fighting the it-could-be worse-monster, and it really could, but again I become aware that my situation is what it is and I can't help feel this way. So gosh darn it I'm going to allow myself to.
Sunday, 18 November 2012
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.
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.
Wednesday, 14 November 2012
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!
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!
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