Good-bye Pink and Purple

It's hard to believe that it's been over two weeks since surgery.  The past two weeks have been busy and  have gone by very quickly.  I started a post a week after surgery, but time never allowed me to finish it ... so here's the update 17 days post op.

Matthew found sleep wasn't so great the first night in his own bed.  Keeping his feet on the elevation pillow was a bit of challenge and by morning he was complaining of a sore back from laying in bed all the time.

He received a visitor the day after he got back home who commented that his family had a "hospital" bed that they were not using.  Several hours later and ta-da, Matthew had a nice comfy hospital-type bed.  This has been such a blessing!!  His feet are much more comfortable because he's not focusing on keeping them on the elevation pillow but can move them around as he pleases and his back is much more comfortable with proper support.

Marietta and Matthew have been "sick-buddies" and like to play Among Us together

The first days he had to be mostly laying down with his feet up above his heart, but as the week went on he has been slowly able to sit up more with his feet reasonably elevated ... so more even with his heart instead of above his heart.  As soon as his feet were not elevated enough they would begin to hurt.  A trip to the bathroom was painful at first because he would have to put his feet down for this.

On Friday, four days post-op, there was an end of season Volleyball game (boys against girls) and pizza party and he was determined that he would go.  So his first outing was to this event, all said and done he was probably out of his bed for about two hours.  This was a good tests to see how the feet would do, would the pain increase to unbearable or stay the same and would the pain go away as soon as elevated?  This went well, the pain stayed at the same level and once he was back in his bed for a bit the pain went away again.  By Saturday he was off all pain medications.

On Sunday he went to church (one service) with his feet propped up on a chair.  While his feet hurt it was more the fact he ended up with an extremely sore back that he wasn't so eager to go out and about again soon ... maybe also because he hates school?!?  So we kept him home for a few more days to allow him some more recovery time.  This also gave a bit more time to make sure he was caught up in school work before getting back into the grove of things.

A special visitor

He returned to school 10 days post-op for a couple hours the first day and about four hours the second day.  After the first day I took him in to the wheelchair rental place to get a few things adjusted on his wheelchair as well as have leg elevators added.  I had not gotten them at first because they were ridiculously priced (almost 4x the amount of the actual wheelchair rental) and I had thought by time he went back to school he wouldn't need them.  Until we got them he could not raise his feet when in the wheelchair but needed to find a chair or something to rest them on and this was hindering him from leaving his bed for too long.  With the leg elevators he can adjust the feet and bring his legs up when needed and quickly put them back down for moving around.  This makes school easier because he is determined to be independent and doesn't want to have to ask someone to bring him a chair for his feet or move the chair out of the way of his wheelchair.  

He was so excited about a couple Lego Technic gifts he received ... still loves his lego!! 
Always fun, but a little more challenging to keep little pieces from rolling off the tray and getting buried in the bed

Monday and Tuesday of this week he went to school full days and it has gone well.  His feet seldom hurt now and you can tell by how much more moving around he does.  He is determined to be independent.  In his room he will either have the wheeled commode or his wheelchair beside his bed.  The commode has worked great for getting in and out of the bathroom since its wheels maneuver more then a wheelchair.  It also was so much easier during those first days when he was in more pain to just transfer once from to the bed to the commode and then upon return from the commode back to the bed.  Using a wheelchair takes a bit more skill to get into the bathroom beside the toilet and then he has to transfer from the wheelchair to the toilet and back into the wheelchair.  That seemed like too much work when in pain, but now that he has pretty much no more pain he will usually use the wheelchair.

Right from day one he had a dislike for the commode because he could not do it himself as it required someone to actually push him since it has small maneuverable wheels.   But over the last days he has figured out how to push himself just right so he can make it from his room to our bathroom without getting stranded away from a wall. So now he pretty much doesn't need any help with the basics while at home.  

I caught the tail end of him returning from one of his bathroom trips.

Yesterday was the big day where we returned to the hospital to have his pink and purple casts removed and switch to walking boots ... but no actual walking.  He was sad to give up his casts.  He thinks they are more stylish then walking boots.  He also feels like the boots mean he should be able to walk and therefore feels more awkward being in a wheelchair.  He'll get over it and get used to it.  There are many people that have walking boots that are on crutches, we keep reminding him they are just a different form of a cast.

Casts off.  The stitches are dissolvable, so he can now bath and clean up his foot and wait for the stitches to disappear

For the next four weeks he will be in the boots and continue to be non-weightbearing.  These are the most important healing weeks, with no stress on the tendons so that they can properly reattach to the navicular bone.  He is allowed to take the boots off when sleeping or resting if he wants.  The boots mostly serve as a reminder that he can't use his feet and as a protector so he doesn't accidently damage them, as well as so others realize that he cannot use them.

After four weeks he is allowed to slowly start walking, first in his boots and then he can try without his boots.  This is different then what we were originally told, where we were told he would go six weeks in walking boots.  But we figure we'll just wait and see how it goes in his walking boots and make sure he's comfortable before we decide to go without them.  We'll cross that bridge when we get there.

So far he isn't too happy with the boots.  They are heavier and bulkier then the casts, but I'm sure with time he will get used to them.  He did not have a good first night with them.  He is allowed to take them off at night, but he's scared to do so, especially with his stiches not all the way healed yet.  So he went to bed with his boots and I suggested he try during the day to take the boot off for an hour or so here and there when he's in his bed and once he gets more comfortable he can take them off at night.  Well ... he had trouble sleeping with the boots, at first just couldn't get his feet comfortable and eventually they started to hurt and feel funny ... so finally after being awake for hours he gave in at 4 am and decided to take the boots off, he was asleep shortly after that.

Overall things have been going extremely well.  So much to be thankful for!!  The challenges we have encountered have been minor and the best part is that his pain has been so easily managed. The timing of all of this has also been great.  With all the COVID stuff going on, we are thankful the surgery took place at all!!  COVID has meant that Matthew is not missing out on sports and he won't be pushing himself to do more then he should in order to get back into sports.  And this week they announced that Grades 7-12 will move to online learning until January 8th.  While I'm not loving the school at home idea, my knees are definitely loving the fact that I won't have to carry Matthew into the house after school each day.  My knees have not been too happy about climbing stairs with that much weight, the one time I came close to going down with Matthew when my right knee gave out.  This was not something I had thought about when planning ahead for this.  

Matthew was shown how to bum up or down the stairs before he left the hospital and we may have to resort to this if necessary.  It brings it's own challenges because then he has to be lifted into his wheelchair from the ground, which is hard on the back.  The other factor is that it's winter ... the stairs are either snow covered or wet.  Normally we use the garage stairs, but with the rest of us using those and them being wooden it's hard to keep clean.  Guess he's just going to have to accept a wet or dirty butt 🤷  Yesterday when we got home from the hospital the outside stairs were actually clean and dry so he did give it a try.  With only 3 1/2 more weeks of non-weightbearing to go and him not needing to go out of the house every day anymore "We've Got This!" 😀

"And my God will supply every need of yours according to his riches in glory in Christ Jesus.  To our God and Father be glory forever and ever. Amen."  Philippians 4:19, 20

Home

Everything went really well last night and by 7:30 am we were going over the discharge information.  Matthew slept well last night.  Overnight the local anesthetic wore off and this morning he could again feel his toes and had some slight pain in the area of the incision/stitches, but the pain is mild.

I left Matthew to enjoy his breakfast while I headed back to the Ronald MacDonald House to help Rob pack up and clean the room and then we returned to pick him up.

He was pretty excited about the nice comfy wheelchair blanket we got him.

It took a little bit for him to get comfortable in the van. His feet will begin to hurt if they are not elevated above his heart, so sitting up for a longer period of time was not the best for them.  But after an early lunch he zonked out for the majority of the ride home.

He's happy to be home and back in his own bed.  He joined us at the table for supper, but by the end was asking to go back to bed as his feet began to hurt again ... so for the next few days he'll be vegging in his bed, keeping those feet up so they don't swell and they don't hurt.

His sisters put the money for his pink and purple casts in the balloons above his bed, so he's going to have to pop the balloon to see if they paid him correctly. 🤯

It is such a blessing to see Matthew cheerful and energetic, wanting to do as much as he can on his own, but also realizing his limits and using caution.   We are so thankful that everything has gone so smoothly thus far and pray that things continue in this manner. 

Pink and Purple

It's been a good day!  We are grateful that surgery took place, went well and so far recuperation is going well also.  

We arrived at the hospital at 6:45am since Matthew was scheduled for first surgery of the day.  He was off to the OR shortly before 8am.  The surgeon advised it would be about 3 hours, so after an hour of so of sitting around Rob and I decided to go stretch our legs ... we were only gone a short time when we heard our name being paged over the PA system to return to the Unit.  Thankful it was good news.  They were done the surgery, it had gone faster then expected but everything went as planned.  The ANs were removed and they were able to suture the tendons back in place without needing any pins or hardware.

Matthew was not able to see/keep the bones as they are sent off to the lab, but the surgeon did take pictures of them so Matthew could see what was removed.  The large piece on the left is from his left foot.  The one from his right foot came out in two pieces, which are pictured in the center and on the right.

Apparently it was a busy day in the OR/Recovery Room today and there were lots of babies screaming/crying when Matthew woke up.  So his stay in Recovery was short and they brought him back to the Unit as soon as they could.  He was still pretty zonked out and slept for the next hour and a half, before slowly waking up.

Physio came around in the afternoon once his nausea began to settle to teach him how to get in and out of his chair.  They provided him with cast shoes to give his feet some grip, since casts are really slippery, so that he can do heel pivots.  He is allowed to put some weight on his heels in order to balance himself when transferring in and out of his wheelchair.  This is the only time he's allowed to put weight on his feet and most of the weight should still be in his hands or through someone assisting him.

Yes those are pink and purple casts. I guess he was desperate enough for $10. 

At this time he is being given stronger pain killers (I believe Ketorolac) and his feet are still numb/"frozen" from the local freezing they gave. So he is feeling good with almost no pain.  He feels like he could go home, but that can't happen until the local anesthetic wears off and we know how his pain actually is. Feeling well has given him a chance to try to be independent, and he is determined to do everything himself.  At this time bathroom breaks are his only time out of bed as he has to focus on keeping his feet elevated above the heart to prevent swelling. 

Overnight the local anesthetic will wear off and by morning we should have a better indication of how he is truly doing pain wise.  If all is well then we will be able to head home tomorrow. 

Thank you to all who sent their well wishes and prayers, they are muchly appreciated. It's a little bit of a different feeling to be in the hospital with something that is not so complicated or chronic or serious or life-threatening.  It's a different province,  different hospital, but still so many of the same things that bring back lots of memories of past events in our lives.  Adding the Ronald MacDonald into the mix also brings up extra memories of where we were 13 years ago at this time, which also makes us think of where we were 17 years ago at this time.  Life has certainly had it's challenges and this seems like a simple journey in comparison, but it is still a journey that Matthew has to go through and will need strength and patience for during the process.  We give thanks that the Lord has cared for him this day, that he could be healthy and able to have his operation, that all went well with the operation, with no surprises or extra challenges and that so far recovery is going well.

Oh give thanks to the Lord, for he is good

for his steadfast love endures forever!

Psalm 107: 1

Accessory Navicular

 Accessory Navicular?  What is that you may ask?

Google tells me that “an accessory navicular is an extra bone that is on the inner center arch of the foot. Up to 2.5 percent of individuals are born with the accessory navicular. Throughout early childhood, this condition is not noticed. However, in adolescence, when the accessory navicular begins to calcify, the bump on the inner aspect of the arch becomes noticed … Accessory navicular is a fairly uncommon condition which is rarely symptomatic”

An Accessory Navicular (AN) is something you are born with.  It is an extra piece of cartilage located in the inner side of the foot just above the arch.  As children grow this cartilage develops into bone.  For most people this AN is not a problem.  The above quote says 2.5% of the population have an AN, but various websites give different numbers anywhere from 2% to 21%, 4% being the most common.  The reality is that they don’t really know how many people actually have an AN because if your foot is not giving you pain you’re not going to be having an x-ray done to indicate it is there.  What they do know is that of those who do have an AN it is rare or uncommon for them to be symptomatic, if it is symptomatic often non-surgical treatment can help, such as custom orthotics, in a small number of cases surgical intervention is required.

So why the foot anatomy lesson?  Well ... doesn’t something like this pretty much fit with our “One Percent Family”? 🤷

Over the past 5 years Matthew has had feet pain.  He was originally diagnosed with planter fasciitis, which I knew was incorrect at the time based on where his pain was, but since orthotics seemed to take the edge off the pain we just stuck to making sure all his shoes had orthotics.  Summer of 2019 rolls around and he's hobbling pretty bad, along with having some knee issues.  Now that we have a benefits plan I figured we might as well invest in some custom orthotics to help settle this issue.  

An x-ray from the podiatrist showed us that Matthew has Accessory Naviculars.  Over the next 6 months we work with a podiatrist, custom orthotics, knee braces (is the knee pain from how he's walking, is he walking this way because of the knees or the feet?), physiotherapy for the knees and the feet, several bouts of complete rest, icing and oral and topical anti-inflammatories, and shockwave therapy.  The knee pain was likely Osgood Schlatter and between time, braces and physiotherapy this pain has mostly subsided.  Custom orthotics took a bit of the edge off of the pain in his heels for basic walking, but it returns as soon as he is more active.  Unfortunately nothing has helped the pain in the AN area, except for sitting on his butt and doing absolutely nothing, which COVID proved when all sports came to a stop and he was able to truly rest, but as soon as he got back out to do sports or a long walk the pain was back.    

The podiatrist we seen was hesitant to do surgery, feeling it was better to wait until Matthew had finished growing.  As I did some research and read what I could find about AN Syndrome, I found that the surgery was often done around age 10-12 and many adults who had the surgery had suffered with pain throughout the years and wished they had had it done at a younger age.   And so we decided to get a second opinion from someone who normally deals with children, which meant heading to Calgary to the Children's Hospital to see an Pediatric Orthopedic Surgeon.

Our first visit to Alberta's Children's Hospital (ACH) was a bit of a waste of time.  I'm not sure why, but we didn't actually see a surgeon, I think the guy we saw was just a pediatrician (from what I can tell from google).  Maybe it's a bit of a triage process, but what he suggested was nothing we hadn't tried already.  The only difference was that he wanted Matthew to talk Aleve consistently for one month and wear his orthotics/shoes at all times, except when sleeping 😆  After one month we called to say it had made no difference and we were placed on the list to see a surgeon ... except by this time COVID had hit and it wasn't until the end of September that we seen the Orthopedic Surgeon.

We are able to see the Orthopedic Surgeon on September 29 and he presented Matthew with three options: 

#1 - Do nothing - it may go away in a year, or 5 years, or 20.   With this option is the choice to live with the pain or adjust his lifestyle to reduce the pain.
#2 - Have surgery done to remove the AN and reattach the tendons properly.  Do one foot, wait 6 months until recovered and then do the other foot. 

#3 - Have surgery done on both feet at the same time.

Matthew had no trouble ruling out #1.  He wasn't for surgery during the first months of constant pain, but by this point he just wants to be done with the pain.  The pain is pretty much constant and increases as soon as he does almost any activity (except biking, which he loves to do and is very thankful for).  During the winter when he played both basketball and hockey there were days where he pretty much crawled once he got home because it was so painful to walk.  Ice and pain medicines did nothing to reduce the pain.  But he loves his sports and so he would get up and go out and do them again the next day.  At first I would often think it couldn't be that bad if he would go back and do more sports, but eventually you could see that it was just the stubbornness of not giving in and trying to enjoy himself without having to sit on the sidelines all the time.  And some days no matter how hard he tried to keep going and ignore the pain he would still be hobbling.  So #1 was not an option in his mind.

The decision was between #2 and #3.  He knew he wanted #3 but we had to help him realize some of the logistics of this so we knew he had made a decision knowing what he was getting into.  For a period he felt guilting for wanting #3 since it would be more work for us, but we also helped him to realize that we were okay with that, and in the end doing it once with more work would probably be less then doing it twice and all the extra driving back and forth to Calgary and physio etc.  And so the decision was made to move forward with option #3.

We had thought this would mean a surgery wait of about a year, giving us many more months to be confident in this decision and that he wasn't outgrowing the pain.  But we were surprised to find out that they expected to be able to do the surgery at the end of November/beginning of December.  And even more surprised a few weeks later when we actually got a surgery date of November 9th. 

As far as surgery goes, the surgery itself is not that complicated.  They will make a small incision by the navicular bone and take out the extra part of the bone.  They will then reattach the tendons to the navicular bone.  It is assumed that this is why he has so much pain.  The tendons are messed up and being interfered with by the bone and so this will have to be reconstructed based on what they find.  Depending on what they find they will either attach the tendons with sutures or it will be screwed into place.

It is the recover period that is the difficult part.  In order for the tendon to properly reattach he will have to be non-weightbearing for 6 weeks.  This means six weeks of no use of his feet.  And this is why the decision to do both feet comes with a lot of extra work.  He will be wheelchair bound for six weeks, will have to learn how to transfer himself from bed to chair to toilet, etc without using his feet.  We of course can help, but with time hopefully he can become somewhat independent.  Getting him in and out of the house means carrying him up and down nine steps, but once in the house everything he needs is on the main floor.  We moved him into the spare bedroom, so he is on the main floor.  Elevating his legs will be really important for the first days, so we are expecting he will be in bed with his feet up for the first 5-7 days.  After that we will see how he's doing and how independent he is able to be and then figure out the whole return to school process. 

So here we are the night day before surgery.  It was a busy couple weeks before hand getting in some last minute appointments and prep before surgery as well as the challenge of getting his medical equipment for post-surgery organized - you would think that there would just be a simple system for out-of-town children seeing as it's a Children's Hospital that serves more then just Calgary, but alas, nothing in the medical system ever seems simple or straightforward.  Regardless, by Friday morning we finally had all the correct equipment.  And by Friday evening we were on the road headed to Calgary due to a blizzard that was suppose to hit southern Alberta.  We did not want to get stuck in Coaldale unable to make it to Calgary, so we headed up before the storm came. The storm arrived later then expected (we could have waited until Saturday morning to leave), but it did arrive and we are thankful to be in Calgary, at the Ronald MacDonald, right across the road from the hospital.  The weather will not prevent us from getting to his surgery, now it's just a little over twelve more hours of him staying healthy with no sniffles before we arrive at the hospital at 6:45 am

September 2020

I had to look for a while to find a picture where he wasn't wearing a hat.  They are pretty much a permanent fixture on his head.  But prior to surgery I wanted his hair short so I did not have to concern myself with keeping his greasy hair clean (that's enough of a battle when he has two feet and can shower himself 😨).  So just so you all know 😁... he HATES his new haircut!!!  He didn't think I meant "that short" when I said short.  My preference would have been a buzz cut, then he could just sponge bath that part of his body too.  For now he gets short fuzzy hair, with no product in it, so it doesn't get greasy as fast.

Haircut done!  Ready for a Swim!
Friday night we stayed in a hotel and on Saturday afternoon we got a call that the Ronald MacDonald House had a room available for us, so we moved there Saturday afternoon - but not before Rob and Matthew got a swim in.

Oh ... and his sisters dared him to get pink and purple casts.  I don't think it's worth the $10's they'll give him, but we'll see what he decides 😲  I'm sure if someone offered him more money he'd have an easier time deciding 😆 or maybe he just wants those colours because he knows how much his mom and dad don't want them 🤷

It is our heartfelt prayer that all goes well with surgery tomorrow, that the Lord may bless the surgeon's hand as he does his work.  In a world where less invasive medical procedures are a daily event we often just assume that all will go as planned, but we know that all will go as GOD plans and so we lay this before Him knowing that He will be watching over Matthew.  We pray that the outcome may be relief of pain, but we also know that whatever the outcome may be God will strengthen and carry us, just as He has done in the past.

This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us—whatever we ask—we know that we have what we asked of him.  ~1 John 5: 14,15