5 days post op

5 days post op and we're doing pretty good. Fionn is amazing. He hasn't needed morphine for over 24 hours and even before that it was only at night for the previous 2 days, if that makes any sense. He's making due with just the Tylenol and Advil and even then he's going for longer then 4 hour intervals. He amazes me! We've been sticking around the house mostly. We had one outing a few days ago when we needed to go to the grocery store and I didn't like all the puzzled/nasty looks I was getting. As though they were thinking “What on earth have you done to your poor kid?”. Seriously people! The nerve of some people. Today I needed to go to the bank so we ventured out again. Not so bad. Still got a few looks but mostly they were just curious. I went and bought a new book and the lady at the cash asked me what happened and before I could answer her she mentioned her daughter had a similar cast when she had surgery for her clubfoot. I was so surprised to hear of someone having gone through this in person!! I've talked to other parents online but very it's seldom to see other clubfeet parents in person.

We came across the perfect thing the other day. I guess you can call it a tray of sorts. I think it's intended use is for crafting or colouring but it is perfect for Fionn to eat on! I haven't been able to get him to sit at the table comfortably since his surgery so this thing is perfect. He either sits at the couch or on the floor in the living room and he eats. He thinks its fun. I wasn't even looking for one but I was kinda thinking we might need something like it. Then I just walked right by it!

He is doing really well at moving around. He gets off the couch but usually needs help getting back on the couch. He scoots around on his bum or army crawls. His casts are getting a little dirty but nothing too bad. I was nervous the first time he got off the couch but our surgeon said there were no restrictions for him. As long as he was comfortable and not in any obvious pain. So this is incredible for him to be getting around this much.

My only real concern is that the toes on one foot don't move so much. I'm suppose to make him wiggle his toes every now and again. On one foot he can wiggle them just fine with no pain and on the other foot, if he can manage, the movement is barely visible and he says it hurts. They weren't too concerned at the hospital so I'm not making a big fuss about it. I will keep a closer watch on it but it seems to be okay. His toes are warm and pink still so those are both good signs. He says he can feel it when I touch his toes but he can also see me do it so I don't know how reliable that is. If things get visibly worse then I will call our surgeon but otherwise we see him next week for a cast change anyways. Looking forward to see those little feet again, even if it's only for a few minutes between casts.

This could be serious!

I'll need to write you a prescription 

day after surgery

He is my whole world!

Oh dear, oh dear, what a night. Well first I was very glad to see my mom! Mom's always make everything better, even if you yourself are a mom. There's nothing better then seeing your mom walk in with a smile and a bag of fresh food! What a saint! She went above and beyond and brought enough for two meals and snacks and drinks. I still would have been happy to see her without the food. But food is always a plus! Fionn was getting really antsy at this point and wanted out of his bed. So after his diner we got the nurse to help us put him in a wheel chair so we could walk around. My sister and nephew came next and brought us more food and a present for Fionn. They had opened the play room at this point so we went to visit in there. As expected, Fionn was excited to see his cousin. He got a little frustrated when he couldn't really reach to play air hockey. Soon after my other sister, nephew, and my own cousin came to visit . More excitement, another gift and more food! If you're ever going to visit someone in the hospital, bring food. You're always safe with food!

last night's diner.  Not bad for hospital food

What a great gift!

Once visiting hours were over Fionn was in a lot of pain so the nurse gave him another dose of morphine. He sat and watched a movie and this time managed to stay awake. I lay beside him to help him get to sleep. There's something funny that happens when you're overtired. If you've ever had a child and thought to yourself “Why aren't you sleeping, you're soooo tired!” Well now I get it. I was so tired and for some reason, sore, that I couldn't sleep.

looking good boy!

It was a rough night. I was in and out of his bed... he wanted some mommy snuggle time. He kept waking up and I kept waking up. He was in quite a bit of pain. He was also very uncomfortable which is understandable. He kept saying he wanted to go home to sleep in his bed. So did I! I've never been a good sleeper unless I'm in my own bed. But there was no where else I would have rather been then right next to him. He'd also been drinking water and juice like there's no tomorrow and filling diaper after diaper at an olympic rate and this morning at around 4:30-5 O'clock he threw up a couple times. I managed to move fast enough to not get some on me but he was covered. Luckily a nurse was walking by and acted quickly as well. She brought clean linens and helped me change him and that was that. A few gags here and there but nothing quite like that episode.

Yesterday and for most of the night if he was in pain he would just say “mommy my feet hurt” or “mommy I hurt” This morning was a different story. He was fussy and crying and couldn't get comfortable and kept wanting to call the nurse. He's smart and already concluded that the nurse regulates his medicine. And he's also aware of the call button so he's always trying to grab it.

is that comfy?

We saw a team of resident orthopaedic surgeons this morning who came to check on Fionn around 7:30am. The nurse had just came in before hand to take Fionn's vitals and woke us up. My hair was a disaster and were it any other circumstance, I would have been utterly embarrassed to be that dishevelled in a room full of cute doctors. Life goes on. Poor little guy couldn't get settled until around 9am and he went back to sleep. I jumped at that opportunity to go to the kitchen to get some food in case his appetite came back, then went down to the coffee shop for some much needed coffee. I woke up with an odd sort of head ache this morning and I needed that jolt of caffeine.

Then around 10am our surgeon came in to check on Fionn and elaborate some more on how the surgery went. They did the tendon transfer on both feet and ended up doing a hind foot release on both feet as well. I was trying to find a good definition online but all I could find was medical jargon that didn't really explain much. Basically it's pretty invasive and extensive. The hind foot release means severing the hind foot joints, cut the heel cord tendon, lengthening them then and reconstructed it. And that's just the back. The tendon transfer is on the top of the foot. They cut the tendon that runs from the top of the foot to the inside of the foot and they transfer it to the outside of the foot to help pull the foot outward instead of inward. Poor little guy! No wonder he's in pain. I get a paper cut and I'm in pain.

watching a movie

He woke up when the surgeon came in. And thank goodness his appetite came back. He's had more jello, cereal, pancake, scrambled eggs, a sausage, and now he's having another Popsicle. But he's still pretty out of it. Every now and again I notice his eye glaze over and he won't respond when I talk to him. It's kind of scary.

They let us go home today.  We packed everything up and wheeled ourselves to the car.  It was kind of tricky getting him comfortable in the car but we managed.  When we got home I put him directly in our wheelchair and we took a little walk since it was so nice and we hadn't been outside in a little while.  There's something toxic about hospitals.  It has a general feeling of unease and you usually leave there a little queasy.  I felt kind of like a zombie driving home.  We were only there for 2 days but it felt like a week.  I can't imagine what it feels like when you're actually there for a week.  I sure don't want to find out.   These next few days will be interesting... stay tuned.  But all I can think of right now is taking a nice relaxing bath and sleeping in my bed, once I put Fionn to bed that is.

Surgery day... warning, it's a long one

Today's the day.

Last night was terrible. I went to bed earlier then normal. I had to listen to two 30 minute sleep meditations to just fall asleep. Someone texted me at about midnight which woke me up. Then after that I kept waking up every hour, sometimes every half hour. It was a fitful sleep... if you can even call that sleep. I woke up, got everything in the car, my coffee made, then went to wake up Fionn. He forgot what day it was and wanting to watch Dinosaur train. But he was very good when I said its time to go see the doctor to get your feet fixed.

In hospital jammies, playing in the waiting room

We got to the hospital so early and saw a slough of nurses getting off at the bus stop... shift change. The parking lot was nearly deserted so we had our pick... but we also had our handy handicap parking pass so we got the prime spot. We arrived at the day surgery unit and were the second ones there. We saw a nurse about 10 minutes after we got there who asked a bunch of questions and took his vitals. She placed some numbing cream on both hands with a clear bandage on top for the IV. She gave him Tylanol as well and the hospital PJ's. We changed and went to play in the waiting room. About 30 minutes before the surgery time, they gathered a few kids who all had 9am surgeries and we walked down the hall to the recovery room. Fionn and another boy helped the nurse wheel an empty bed down the hall. They were so cute. A doctor stopped and laughed and said “that's a first!” Each child was sent to a seperated area to wait for the anaesthesiologist and our surgeons. The resident anaesthesiologist spoke to us first and explained to Fionn everything I had already talked to him about in terms of the mask and going to sleep. She explained a few things to me as well. Our surgeon talked to us too and I signed some consent forms and answered all the same questions that the nurse asked me earlier. I got dressed in a gown, hair net, booties and a mask and got ready for the infamous walk to the OR. Fionn kept asking to go for dodo. He seemed unnaturally keen to go to sleep at 9am. I had to stop at the door to fix my mask and Fionn kept walking in the OR like he owned the place. He was lifted on the OR bed and someone put a heated blanket on him. One nurse was putting those heart monitor stickers on his chest and a heart rate thingy on his finger and the anaesthesiologist was getting ready to put the bubble gum smelling mask on his face. He was excited about the bubble gum. Another nurse told me to hold down both hands because most kids first instinct and reaction is the thrash their arms and pull off the mask. It took him a while to fall asleep but never once fought me. I barely had to hold him. He was chatting with the nurse as he fell asleep and my body was twitching with sad laughter. My body likes to react in inappropriate ways, like laughing when I'm scared. I had to hold back my tears and give him a kiss. Then I was led out of the OR and back to the recovery room. The nurse asked me if he was my first. I guess he must see a lot of teary moms.

talking to the doctors before surgery

Once I was out of there I went to get us admitted and walked around some to help settle my nerves. I thought about eating but I didn't think I could hold down food at that moment. I went to the hospital gift shop and got him a few dinosaurs. They are the only shop I know of in our city that have dinosaur train figurines. So I got him two more to add to his collection of dinosaur toys. Then I went to the waiting room full of parents with kids in surgery. I saw a dad break down. That was heart wrenching. I started writing part of this post, updated my family and friends on facebook, read a chapter of my book. I didn't think I would be able to do anything but sit and wait but in fact all I wanted to do was keep busy and keep my brain active. At which point I went to the cafeteria to eat, walked around some more and back to the waiting room I went.

After 3 hours our surgeon came out to see me to tell me that the surgery went very well... such a relief! He said he was still sleeping and would probably keep sleeping for at least a half hour. In fact he slept probably 45 minutes in the recovery room before they came to get me. I walked in a saw my little guy all dopey eyed with his legs in really big casts propped up on a pillow. He was trying to hold an orange Popsicle but didn't quite have the strength in his sleepy drug haze. Oh boy its so hard to see your little one like that but I was just so relieved to see him awake and well... or well enough. He said his feet hurt a lot so the nurse gave him morphine which made him even more sleepy. So then began his fight to stay awake. It wasn't a fair fight. And in the end sleep took over. Every now and then he would open his eyes. Soon after we were transferred to our room. He slept some more while the nurse gave me the grand tour. Room, bathroom, kitchen, nurses station... everything I needed to know. He's pretty much been sleeping ever since. He woke up long enough to eat a blue jello, an apple sauce and drink a bit of orange juice and water.

In the recovery room

Falling asleep in the recovery room

His oxygen level kept dipping too low so the nurse propped the mask beside his face while he is sleeping. Morphine will have that effect; Sleepiness and low oxygen.

sleepy boy

I think the hardest part is doing this alone. I've never been sad or felt sorry for myself for being a single mom... I have lots of help from my family and friends. But today, sitting here alone in this waiting room, walking these halls by myself... I felt completely and utterly alone. I know that some of my closest people would be here if they could and things like work and school gets in the way, but I still feel alone. On the other hand I've had a lot of people wish us well and I know that I have a lot of people rooting and praying for us which is a nice comfort. Is it okay for a grown woman to say she wants her mommy?

oh dear those are very large casts

He will need a cast change in two weeks time. I'm just glad the hardest part is over and now we can begin to heal and hopefully this will be the end of it. I've been getting a lot of negative feedback from other parents on the clubfoot forum I belong to though. Mostly because of his age. I guess 3 and a half is a little young for this procedure. I will say that I trust our surgeon and his decision. I am aware that there is always the possibility of more relapse but there is also that possibility with just re-casting and not opting for the surgery. I spoke about it with our surgeon and we concluded that this was the best thing for Fionn. All kids are different and I wish we didn't have to do the surgery but this is where we are at and we shall go from here. I've done my research as well. I wouldn't just jump in to this without knowing what we were getting in to. Of course you never really know until you experience it. But let me stress again that every child is different and all cases of clubfeet are different. So doctors treat each individual case as they see fit. I think we made the right decision, I just hope we won't regret it.

So hopefully tonight won't be too bad. We are expecting a few visitors. It will be nice to see some familiar faces. And I'm sure if Fionn is awake that he will enjoy seeing them too.   

Sausage toes

Happy Easter!

I hope everyone had a lovely Easter.  The Easter bunny stopped by our place and left us some eggs to hunt.  Fionn had a fun time gathering the eggs in his basket.  We had a hardy breakfast and then went to the Experimental farm with my sister and nephew, Dylan.  They boys had tons of fun seeing all the animals.  They saw some sheep and lambs, horses, cows and calves, baby chicks, bunnies, goats, and some very large pigs!  We spent the afternoon with my cousin and then had a delicious dinner at my aunt and uncle's place.

Pretty much the moment I published my last post, the hospital called me to let me know what time Fionn's surgery is going to be, where and what time we had to be there, and that to make sure he fasted.  At least he can have dinner and nothing else until after his surgery.  I've been crossing my fingers that we got an early surgery so he wouldn't have to starve for that long.  When she told me his surgery would be at 9am I did a little happy dance.  Then she said we had to be at the hospital at 7am and my happy dance slowed down a little.  I'm not complaining.  Really I'm not... just not a early morning person.  I am thrilled that he will be one of the first surgeries of the day, if not the first.  So our morning will look something like this: I'm thinking if I have everything prepared and ready the night before we can do okay by waking up at 5:30 and maybe afford one tap of the snooze button.  In fact, as I write this, I just realized that we can't eat breakfast so we can probably just wake up at 6am, which gives us plenty of time to get dressed, make a coffee to go for mommy, and jump in the car.  With no traffic, it's really only a 10-15 minute drive to the hospital from our place.  So this way there's no rush and less stress.

Tomorrow will be my prep day.  So laundry, tidying up, making sure the cats have plenty of food, water and a clean litter box, enough to survive 2 days without us.  I'm going to give fionn a quick hair cut and sponge bath.  Going to pack our hospital bag for our overnight stay and load it in the car so I don't have to worry about it wednesday morning.  Then I put Fionn to bed, I'll probably have a nice relaxing bath to help settle my nerves and go to bed early.  I've got some pretty wicked butterflies in my stomach right now.  40 hours until his surgery... yes I broke it down into hours.

Baby Chicks!

Dylan checking out the Easter eggs

Dylan

Dylan and Fionn

Dylan and Fionn

Add caption

This baby cow came over to say hello

Some bunny was here!

In his Easter best!

Third week of casting

Today we went in to get Fionn's third set of casts.  The last pair before his surgery.  The casting tech and our surgeon were surprised from his bruising.  The tech thought maybe they held his leg too tight during the last casting which is kind of frightening but I don't think that's it.  Regardless it's not so bad.  No marbles stashed in the casts this time and the sore didn't get too much worse.  No broken skin, just redness and a bit of swelling.  His toes are getting pretty yucky so I made sure to jump in and clean the toe jam out of there with a towel.  They wipe his legs down with alcohol between casts but usually miss between the toes.  And oh man do his feet ever smell bad.

His legs don't look too bad, not as dry as I thought they would be, then again its only been two weeks.  And again he did really well.  No complaining.  He really likes our surgeon and our surgeon is really great with kids so they always have fun.  This week's casts are blue and red.  He wanted blue and yellow but they didn't have yellow, so red it was.  It was really quick this week, we were in and out in 25 minutes.  We spoke a bit about his surgery next week while they were casting him.  We should hear from the hospital  by monday or tuesday and they will let us know what time to be there and all the details.  But our surgeon is really confident that everything will go smoothly... he better be!  I don't think I would ever trust a surgeon who had doubts.

Normally we're the only ones in the 'body shop'(the casting room) when Fionn's getting his casts on but this time near the end, a couple came in with their 17 day old baby there to get his second casts.  He was so teenie tiny, it reminded me of Fionn when he was new born and starting that whole process.  Fionn was 5 days old when we met our surgeon for the first time and got his first set of casts.  Seems like a lifetime ago and yet its only been 3 and a half years.  We'e old pros now.

In any case, we will be enjoying this long Easter weekend.  We're planning a trip to the farm to see the new baby chicks and baby lambs and there will be an easter egg hunt as well.  Should be a fun time for all.  I will do my best to contain my ever mounting anxiety and be strong for Fionn.  besides, I can do all the freaking out I want when he's in his 3 and a half hour surgery.  I'll have plenty of time then.

Oh hello legs, long time no see!

the mysterious bruise...

His sore... it's much more red and angry looking in person

new casts!

The ups and downs of casts

I thought I would talk a little bit about Fionn's casts today and how they affect our day to day life.  These are little details that would have been nice to know before but learning on the go is just as good i guess.  In terms of mobility, he is pretty good at getting himself around.  The first week in casts was fantastic.  He had no problems walking in his special cast shoes(more on them later) and pretty much kept up to his normal pre-casting pace.  We are in week two of casting and this week he's not too keen on walking.  Not sure if it's just the sore that's bothering him, the position of his feet this week, maybe the casts are tighter, or possibly all of the above.  In any case, he's constantly asking me to pick him up because it hurts to much to walk.  His wheel chair doesn't fit in our car so we only really use it to go for walks around our neighbourhood.  I keep a stroller in the car though so that's useful.  The trouble with the stroller though, is that he's already a heavy kid and now with the casts he's even heavier so it's hard to navigate with the stroller... it's not so easy going.  But we do what we can with what we have.  He also crawls around if I'm not around to pick him up.  I have a few pairs of big wolly man socks around so I keep those on his feet since it's still chilly these days and it helps him no slip so easily on the floor.  They also help hold his shoes on better.

As for the cast shoes.  They are annoying to say the least.  Because his casts are not a perfect 90 degree angle, they tend to fall off quite frequently.  We tried buying crocs and cutting them to fit but those were a bust.  They didn't stay on and were even worse then the cast shoes.  In the house he doesn't wear them and the fiberglass top coat seems to be pretty sturdy.

As I may have mentioned already, excuse my redundancy, this week his casts are causing him to bruise.  Mostly on one leg but still enough to cause some slight discomfort.  I don't know how to help revent these bruises and sores and all these little injuries that go along with wearing casts long term.  And this is only week two!  I don't remember him getting sores when he was an infant... then again he wasn't walking in those.  And when he broke his leg last year he didn't get any of that and that cast was on for 6 weeks!  But again that was only on one foot and he wasn't really walking on it so much.  I guess he just did too much too fast during his first week that this was his body's way of saying slow down... don't you know that kids don't slow down!?

Another thing that has proven to be a struggle is bath time.  We ended up putting a stool in the tub and having him sit on it with his legs hanging over the tub and I put a towel over then so they wouldn't get wet.  Then I washed his hair and scrubbed him down with a sponged and rinsed him off the best I could.  I've got to find a better way to do this because that was uncomfortable.  I wish I had one of those hair dresser sinks to wash his hair.  It would come in handy.

I'm not complaining really I'm just trying to paint a picture of what we're dealing with and if other parents who are facing the same situation soon make their way over here then they can get an idea of the things that they may go through in some form or fashion.  Obviously every parent will deal with it differently but I'm certain that the bottom line will be pretty similar.  And if I can be of any help by sharing our story then my job is done.  Sometimes its a comfort to know that other parents struggle just as much sometimes.  Being a parent is no easy job but being a parent of a child with 'special needs' is a little tricky sometimes.  But I wouldn't trade this job for the world.  These are the things that shape a person and makes them stronger.

It's good to know I'm not alone

I'm part of the online community for parents with kids with clubfeet over at yahoo groups. (nosurgery4clubfoot)  I get lots of feedback and questions answered from parents who have gone, or are going through the same things as we are.  It's great to know I'm not alone and that most parents share most, if not all, of the same thoughts, concerns, and feelings as I do.  It's a very supportive community and I'm very glad I found it.  I mean most doctors do not have time to linger around answering all your questions.  The important medical questions YES, but all the other questions like which baby carrier works best for babies in casts or boots&bars, or which car seat best accommodates clubfeet babies... those sort of things that only parents who have gone through the process can tell you.  They have the experience and can give you advice and tell you their story.  Doctors don't have time for that sort of thing.  

Anyways I came across a post where someone posted an essay they wrote about the experience of bringing their child in for surgery.  It brought tears to my eyes.  I think it hit real close to home since we will be going through that in less then 2 weeks.  I thought I would share a link for anyone who is interested in reading it.  It's quite moving:

https://www.facebook.com/note.php?note_id=10151428358545023

I'm so glad that more parents are speaking out and educating the public.  Before I knew that Fionn would be born with clubfeet, I had no idea what clubfeet was!!  I know it's not so common but awareness is key.

On another note, I'm not sure if it's because this week's casts seem tighter but Fionn keeps complaining that he's hurting.  I know he has a sore so that's probably bothering him.  He's also got some new bruises where the casts ends below his knees.  They've shown up in the last two days.  Luckily he'll get a new pair on thursday.  He just needs to hang in there a few days.  I guess some discomfort is to be expected but I assumed since he didn't complain through the first week that things would be the same this week.  But otherwise he's still in good spirits and doing very well.  Just less walking.