I Can’t Believe Summer’s OVER!!!

Wow!  I just can’t believe that summer is over.  I was hoping to do more blogs/updates over the summer, but I guess that didn’t happen.  I will update you now.  We woke up this morning to Ben yelling in the living room “Hey everybody – come here….you have to see this!”  We slowly walked into the living room where Ben was looking out the window.  I looked out and Ben said “look how beautiful the sun is – it’s pink”.  And that is exactly how Ben is.  He is now almost exactly 5 months post-op (on the 27th).  I have to say that I wish his pain had completely diminished, but it hasn’t.  Although he still doesn’t complain, we watch him closely for signs of discomfort, and he does ask me for Tylenol more often than he used to.  We took his discomfort (especially when traveling) into account this summer and stayed very close to home with the exception of going to Calgary once to visit the great-grandparents (and Aunty Karen).

Although our summer was fun and we enjoyed hanging out, it was a lot of work for Ben.  We went to tutoring two or three times every week.  We are still trying to catch up from missing so much school, so it is important that we not let Ben lag over the summer.  I know what you’re thinking…”aren’t you a teacher?”  Ummmm…yeah, but sometimes I get tired of being the pushy guy around here.  Ben enjoys his tutoring, and it’s an opportunity for him to go, get it done, then have fun.  We also do speech therapy once a week, which Ben also loves, but it is a lot of work for him too.  I think his speech is improving quite a bit.  On top of that, we still do physio and a zillion other appointments where we wait forever to see a doctor who spends two minutes with us and tells us to come back in another six months.  Anyways, it’s better this way because I wanted to do as many appointments over the summer as possible, so we don’t miss as much school this year.  We will still have some follow-ups during the school year, but hopefully I can keep it manageable.  We are currently working with our physio to find someone local to do his physio twice a week, which will save us tonnes of time.

Healthwise, Ben continues to get stronger and is eager to run and be active.  We have signed him up for soccer in the fall (with his doctor’s permission and a teensy bit of hesitation) with the promise that he won’t get involved in a bench brawl. We will be playing him at a lower level than his peers, so he will be with smaller players (so even if he does get in a bench brawl, he should come out on top).  I DIDN’T allow him to go back to dance just yet because his neck is a bit of a mess, and I don’t think the stomping will be good for him yet.

So….his neck….  Well – it seems to have gotten worse – even recently.  Although he had limited mobility pre-surgery, his mobility now is quite awful.  His physio and I noticed it getting progressively worse over the summer, and we are working with others to figure out why.  He can’t really look up, which must be so frustrating for him.  I noticed him drinking a can of pop the other day when we were at our friend’s cabin.  It was the bottom third of the can and he literally had to limbo to drink it (which I thought was super impressive considering his back is mostly made up of two titanium rods.  Anyways, we have no idea what is really going on.  The movement to look up generally comes from your cervical spine between C1 and C2.  Ben’s surgery was only done on C6 and lower, so it doesn’t necessarily make sense that it would be affected, but it is.  Our physio thinks it might be a joint pain (not arthritis), but it’s almost impossible to tell.  If that is the case, it is RARE, RARE, RARE that a child would have those problems, so there is no real protocol for treatment, so that is why we are looking for adult treatment (adults have this kind of joint pain), but on kids.  So, this time we need an adult specialist who would be willing to work with Ben.  Once again, we will be charting new territory on that one.  Of course, it could be something entirely different, but it’s hard to say.

After coming home, we had a few other surgery consults, but I think the only one on the near horizon will be his neck.  We are looking at doing two jaw surgeries down the road (I thought it was one when he was 17, but I read in some documents from his surgeon that he plans to do one when he is 11).  As well, Ben’s ears will be restructured over the next few years.  To do this they will pull out a section of rib and reform the cartilage to make an ear.  Ben’s other surgeons tell me I need to hurry and do this before the ear guy retires because he MAKES THE BEST EARS!  (Our life is definitely surreal at times). I’m not sure what the appropriate response is to that.

We are also currently working on building him a new neck brace for him to sleep in (see pics above), so he will go for a fitting for that tomorrow.  The picture above shows Ben getting casted for his new brace….yup….casted.  And….guess who got to get their hands all covered in plaster to help out the orthotist….yup….me!  My resume of medical skills continues to grow.  I totally appreciate that Ben’s team members who know me know that I work best (and shut up best) if they give me something to do…and they’re totally right!

We also have almost mastered his new hearing aids and all the technology that comes with them.  I feel somewhat (heavy on the somewhat) confident enough to train his teacher and EA this year on how they all work together.  Interestingly, they have given me a receiver about the size of a fingernail and told me it was very expensive and to please not lose it.  Sigh…..that sounds like a bit of a recipe for disaster, but we’ll do our best. And… if all goes well with his new hearing aids, they will be mounted to yet more screws in his head (don’t say it – I know what you’re thinking – and you could be right).

Anyways, school is back next week, and the kids are super excited to see their friends again.  Even though there is a tonne of stuff going on with Ben, when he wakes up thinking “this is the best day ever – look at that sunrise – I know that all the peeps in his world have been keeping it a happy, wonderful place for him.  We have a tonne of stuff to do before we go back to school – cleaning, organizing, shopping, etc.   We have some exciting things coming up this year, so check back from time to time and I will send updates!

The reason this is so smooth…my new plaster smoothing skills…you break a leg – call me!  


This little man can cook a pork chop!!!

​​
The weirdest (and funniest) Staycation thing ever!!!

Road to Recovery

Since being home, we have been pretty busy.  I must admit I am missing my life of hospital leisure a bit when my days were filled with deciding my next meal.  We are working hard on physio with Ben, which can be pretty time consuming.  We are also transitioning him back to school.  He is doing ok, but he can still fatigue quite easily.   I am feeling a bit overwhelmed with the task of catching him up to his peers after missing three months of school.  We were so lucky to have the help and attention that we had at Shriners, but being absent that long has obvious disadvantages.  Our school here is also working hard to accommodate him and help me to get him up to speed.

We continue to have concerns about Ben’s neck, but we are trying to focus on the things we can control rather than the things we can’t, which is easier said than done.  As I’ve said before, Ben has an extremely limited range of motion in his neck post-op and his torticollis (twisted neck) is still significant.   Besides doing his stretches and strength exercises, we have now implemented what we call ‘Mission Possible’, which is a course in the house where Ben has to wear a headlamp on his head and put his feet in the footprint spots on the floor.  He then uses his neck to control where the light shines, and he has to hit all the targets, bulls-eyes and wavy lines.  I think he thinks it is fun, which is half the battle, and we can see some slight improvements in his range of motion, so we’ll see what happens over time.  Ben has also started wearing a cervical collar to bed at night.  This was a bit hard at first, but he seems to have gotten used to it.  This allows us to give him a slow, even stretch while he sleeps, which also allows him to work on strengthening more during the daytime.  Boy – this kid works hard and has such an amazing attitude.  I am one lucky mom!

Ben’s full recovery from surgery will take about a year, with a few of his limitations stretching out to two years, and a couple of minor limitations extending for life. Our biggest areas of focus right now are allowing those bones to heal and fuse properly to the new rods and screws; we also want to prevent accidents like falls.  At recess time at school we take him to a quiet area with one friend to play with.  They usually play an imagination game or something like that – we are currently hatching dragon eggs.  This keeps him out of the ‘combat zone’ of elementary school, while still allowing him to participate in recess and breaks.  I am grateful to our school for providing him with his own supervisor to allow him to do this.  When it gets a bit warmer, he can go exploring a little bit further.

One month post -op

Ben’s main activity that he is allowed to do is walking.  We encourage him to walk as much as he can.  His guide also says he can lift up to 2.5 kgs at one month post-op, but I think this surgery is generally designed for teenagers who typically weigh about 60 – 70 kgs. As Ben only weighs about 14 kgs, we are going to continue restricting what he carries until we get to Montreal to confirm this with his surgeon.  For now, I am only allowing him to lift about a pound or so, which is not much.

Three months post-op

Ben will be allowed to start swimming, bicycling, and doing light jogging at this point.  I am not really sure what we will do about bicycling because we are afraid of Ben falling.  I suspect we will just keep training wheels on his bike for the summer to allow him to practice biking without worrying too much about falling.

Six months post-op

At six months post-op Ben will be allowed to do things like skating (not hockey), roller blading, and maybe some cross-country skiing.  Again, we will need to make accommodations to these activities because Ben needs supports to ensure that he doesn’t fall as his skills in these particular areas are not really developed.  At this point he will also be allowed to try bowling, but for his size we will probably use the smaller balls.

One year post-op

At this point we will be allowed to introduce most of Ben’s regular activities.  He will be allowed to go to Phys. Ed class at school and he can now participate in team sports like SOCCER!!!  Our lives should return to normal, with little restrictions on daily living.  At this point Ben will be allowed to go on amusement rides (within reason), so we are thinking that a trip to Disneyland or somewhere might be in the cards for us next year!  🙂

Two years post-op

Saddle up pardner – we can go horseback riding, but no jumping!  What’s an Alberta boy to do?

Lifetime

Things like football, trampolining, and bungee jumping will not be allowed in Ben’s lifetime, which are easy sacrifices to make.

So, we’ve got a lot of work ahead of us and a few sacrifices to make.  I know that our crooked journey will continue, but we will see what happens.  As for now, our focus is on physio and school, and ensuring that Ben gets lots of rest and healing.

 

 

Working out the kinks…

So we got home Thursday, and I was able to enjoy some Thai food and wine with the family.  Then I had the BEST SLEEP OF MY LIFE!  It’s so strange to wake up and not have large groups of people looking at you.  I may need to buy some Grey’s Anatomy posters to hang up on my walls just to feel normal again.  Ben also slept well.

All seemed to be going well until Friday night about an hour after I went to bed and my brain started to go….tick…..tick….tick….and the worrying commenced.  “We’re missing something” I said to Jesse as I popped out of bed.  I went downstairs to my office to think through stuff.  Don’t get me wrong – I absolutely believe I have one of the best medical teams in the world.  I am so grateful for them, but I also am a huge advocate of what I deem as the “parent overlay”.  This is my intrinsic and all encompassing knowledge of Benjamin.  When I shut my eyes, I can’t picture what a normal spine looks like, but I can picture most of his spine – the curves, the hemi-vertebrae, the rods, the missing wedge, his once too soft trachea which has now hardened, his narrow nasal passages, etc.  I know his behaviours, how he responds to pain, his walk, his strength.  I don’t need to look anything up in a file – it’s inside me. So, when I got up that night, I started by thinking and overlaying my knowledge of Ben with everything his medical team told me.

We are all concerned because of Benjamin’s neck pain and his inability to hold his head up.  His neck is also stiff, and he has lost a lot of range of motion.  He used to be able to look over his right shoulder, but now he can’t.  He appears to be looking down a lot.  Today he also complained about pain in his upper arm.  This just doesn’t make sense.  We only did surgery to the lower cervical spine – starting at C7.  He shouldn’t be feeling pain up in his neck.  This is strange not only to me, but to his doctors and his team as well.  He is also TERRIBLE at giving information about pain, so it’s driving me a bit batty!  It is a pain in my neck!!!

I am trying to discern whether my restless, worried feeling is just natural post-op mom stuff, instinct, fear, or the sinking realization that I’ve come home and nobody is preparing my meals for me and washing my floor for me regularly.  When I booked Ben’s physio appointment the other day, it was with the same physiotherapist who stretched him when he was a baby.  I have mentioned before how Jesse and I used to stretch him five times a day for the first year of his life.  One night I stretched him and he seemed ‘weird’.  He was crying (as he usually did when we did physio), but then he just stopped and was still for a few seconds.  His face changed momentarily.  I had gone to our orthopedic surgeon to question him about this ‘episode’ the day before but we didn’t get clear answers.  The next day he stopped breathing entirely (as discussed in my previous post Uncertain Beginnings Part B).  In hindsight I now know that I blocked his soft trachea with the innominate artery from his heart when I rotated his head in the stretch.  Because he was so little and his lungs were so small I literally strangled him for a few seconds.  I’m not sure why it only happened that time, but I am told that tracheomalacia (soft floppy airway) gets worse around this time.  When I stopped the stretch to look at him to see if something was wrong, he revived as soon as I took that pressure off his trachea.  So maybe my unsettledness has to do with going back to the same physio and doing the same stretches again.  A little too deja-vuey perhaps!

Tonight I was able to talk back and forth to my team back in Montreal, and they made me feel a bit better.  When I asked questions, the doctor seemed to take me seriously and sent me frames of Ben’s CT and explained what I was seeing.  He also gave me the go ahead for (gentle) physio, so that will begin Wednesday.  We will also try anti-inflammatories on top of his other medicine starting tomorrow to hopefully reduce whatever is bothering him.   Normally, we would not use anti-inflammatories after spine surgery because it slows bone growth and delays healing, but we will do it short term to see if it can help.  I hope we can improve his comfort and his neck strength a bit this week.  I am taking “Before” picture optimistically.

Yesterday we celebrated both Easter and Hannah’s birthday that we missed because Jesse and I were in Montreal.  Ben woke up first thing in the morning and went hunting with his Easter basket.  We were like “hey – wait up!”  Then he proceeded to eat chocolate for breakfast.  Hannah was a bit more restrained.  The adults played a rather cutthroat game of Risk (in which I dominated the WORLD!!!), and the kids did their own thing play with their toys and games.  So, all in all it was a nice quiet weekend.

Uncertain Beginnings Part A 

Uncertain Beginnings…..Part B

We’re Home!

Well…it’s been a crazy busy 24 hours, but we are home.  I’ll fill you in on some of the details.  First off, we did our X-rays on Tuesday morning to see how Ben looks standing up.  The good news is that his thoracic (chest) area looks really good.  It’s looking pretty straight.  His neck is still causing us a lot of issues. It doesn’t look great in the standing X-rays and in person, and there could be a few reasons for this.  First, his muscles are incredibly weak from being in the halo for so long.  On top of that, we have traumatised his muscles a bit as the result of the surgery.  We have seen weird signs of muscle weakness in his left arm and hand, which could hint at inflammation or possible nerve issues, but that seems to be improving with exercise.  The other possibility is that we have not taken out a big enough chunk of his vertebrae, which is a bit devastating, but we’ll deal with that after we rule out everything else.  We knew that was a possibility from the beginning.  

Sitting up was and still is a big concern for us.  Ben can only sit straight for 10-15 minutes at a time, so naturally flying home was a huge concern for us.  Having said that, our entire team was working hard to get us home for Easter.  We kept timing our sitting sessions wondering how the heck we were going to sit on a plane for 5 hours.  I think we hit our breakthrough on Monday night when the gang were out exploring the hospital after hours: Ben in his wheelchair, Annabelle in her halo, and Raquel and Vienna in their walkers.  It was probably the most unintimidating yet high spirited gang in history!  Ben took some muscle relaxers for the first time that night, and we discovered if Ben went on his side we could go for a much longer time.  This was a huge breakthrough – it meant less bed time and more chair time.  We continued to work hard.  Yesterday afternoon it was confirmed that we were being discharged today!  We spent the rest of the day saying our heartfelt goodbyes to the amazing staff at the hospital and our beautiful new friends (while I tried to figure out how the heck I was going to get everything on the plane). 

The Shriners went to great lengths to get us home safely.  They arranged for us to fly directly from Montreal to Edmonton.  Normally Hope Air helps with our flights, but they use Westjet who don’t fly direct to Montreal.  Shriners didn’t want us to hassle with connections on our own, so they took care of it themselves.  Shriners also gave us a top-of-the-line cervical collar for Ben to use if case he felt uncomfortable in the flight.  We were also given some traction equipment to use at home.  They also called in one of their drivers super early to help us out at the airport today at 6:00 a.m.  They arranged to have a wheelchair waiting for us at the Air Canada counter.  As usual, every aspect of their focus was on Benjamin’s safety and comfort.  Although Ben was on a combination of morphine, Tylenol, and muscle relaxers, it still was a long day.  When we got home, he just hopped into bed.  

Again, we are so grateful to the Shriners for providing us with the highest level of care I can imagine.  This is a private hospital that is available for all Canadians.  They are doing amazing things at this hospital – with technology, research, and care.  I’ll tell more stories of this in the future! Some people have asked if they could buy Ben a gift or a toy, but I assure you this little guy has been overwhelmed with gifts. We would love it if you would consider a donation (anonymously or in honor of Benjamin.) instead. Under hospitals, pick Shriners Canada.  They will send out a letter to Benjamin saying you made a donation in his name (no amount will show).  If you do it “in honor of”, you will need this information:

Benjamin Gartner
c/o Rig-It Oilfield
5-707 12 Avenue
Nisku, AB. T9E 7M2

We are so inspired by hospital by the magic that takes place at this hospital.  I hope to really be able to pay some of that back one day!!!  

Shriners Donation

Even though we are home, I will continue to update the blog with Ben’s progress, other health issues we will face in the future, and interesting insights or inspirations I come across in our hospital world.  This is a crooked journey for us, not an expressway, so we will continue to “travel”.  If you want, click follow or send me a request on the contact form and you will get an email when I do an update as I will update a little less regularly than I have been.  We will be back in Montreal for follow up in 6 weeks.  In the meantime our job is to work on building up Ben’s neck strength and range of motion.  

Uncertain Beginnings Part A 

When Ben was born, it took us about 4 days (I think) to get diagnosed with Goldenhar spectrum or syndrome (depending who you are talking to).  At the time, I didn’t really know what that meant, I only knew that it affected his eye, his ears, and his spine.  We were transferred to our local hospital for this diagnoses and each specialty came in and did a consult.  I would eventually gather all these consults and study them beginning my journey into understanding the medical world.  I didn’t study them to argue with my doctors, but more to learn the language and be prepared with what to ask.  It’s an intimidating world to maneuver and learn.  I used to study before each specialist appointment to try to understand what they were looking for – I studied audiograms, eye prescriptions, xrays, ct’s, bloodwork, and doctor’s notes – all searching for proof that everything was going to be ok.

My first “crash” was when Ben was about 4 months old.  We were to have an ABR (auditory brainstem response) test to help us determine Ben’s hearing loss.  This is a test where they put the patient to sleep through anesthetics and run sounds in his ears while monitoring brainwaves to determine what he is actually hearing.  It is generally quite accurate.  I had done my homework and I was ready!  There are two types of hearing loss you can have:  conductive or sensorineural.  Conductive is more like sticking your fingers in your ears.  The quality of the sound is the same, but it can be really muffled/muted.  Generally hearing aids work well with this type of loss.  Sensorineural loss is when some of those millions of hairs in your inner ear (cochlea) are damaged or missing.  We have no way of determining sound quality, and clarity of sound can sometimes be difficult even when aided.  Anyways, I was ready for this test.  I studied Ben’s diagnoses – I looked at his previous hearing charts – I read specialist notes, I read CT’s and I knew knew knew that his results would come back as a conductive loss.  I was prepared and able to deal with that.  Because we had to be sedated for the test, I was waiting in day surgery with him while he recovered.  The audiologist came in and presented me with the news…it was a sensorineural loss on both sides.  Cue nervous breakdown #1.  In hindsight I’m not why that should be the news that pushed me over the edge, but it was; it did.  I also believe that the audiologist might not have been prepared for my emotional response, but I feel like they handled it pretty well.  My sobs shattered the recovery room and I kept saying over and over “why can he just catch a break”.  They managed to calm me down, saying all the right things.  Afterwards I sent a three page letter to the audiologist apologizing for my tears and also including my documented research as to why I still thought it was conductive (sometimes I just can’t stop myself).  Even today  I wonder why nobody’s filed a restraining order yet!

I remember after Jesse and I received the initial diagnoses we thought – well that is that.  At least now we know what to expect and I was able to slot our little problem areas into nice tidy compartments…ENT….opthamology….neuro….spine….etc.  We were confident that we knew what to expect and we would be able to find ways to deal with each issue.  Little did we know at that time that Ben would come very close to dying in less than 6 months.

Oh…I should mention here that five and a half years after Ben’s first sedated ABR, and a million tests later his audiologists have come to the conclusion that Ben has conductive hearing loss in both ears, so we are quite pleased with that (I say tentatively in case it should change).   On that note – I have a favour to ask, which I am happy to pay for.  Ben will be receiving new hearing aids called BAHA (bone anchored hearing aids).  Normally these are anchored onto the head through a screw, but we want to wait a bit for that to happen (we’ve totally surpassed our head screw allotment for this year…maybe we’ll try again in 2018).  So, the hearing aids that we are getting are attached to a headband.  We have done a trial of these and Ben really does not like the headband at all as he finds it quite uncomfortable.  I thought that we could find a way to incorporate the headband into a boys baseball cap and cut out holes in near the ears to allow the BAHAs to access the bone.  I know that I impressed the heck out of everyone with my beanbag surgery, but I feel like this type of seamstressory (yes, it’s a word) is beyond my capabilities.  If anyone knows of anyone who I can contact to help me with this project, I would be super happy.

Ben seems to be doing well.  He is strong and continues to move forward.  Tomorrow we will be doing X-rays again.  
 

 

Almost There…

Last Monday Ben could not grasp your hand with his left hand and squeeze it in a way that you could discernably feel it was being squeezed.  His head was also sitting in a twisted way on his neck that made me shudder and think…”oh my God – we’ve made it worse”.  He could not take 10 steps without having excruciating pain.  He was unable to sit in his wheelchair for more than 10 minutes without sobbing because of neck pain.

Today I watched him manipulate a Transformer ball easily with both hands.  I got him to squeeze my hands and could feel a good response.  We walked to the other side of the hospital, went upstairs, grabbed a treat from the vending machine and then walked back to our room.  I notice that when he is standing his neck is far from perfect, but it is much stronger and straighter than it was last week.  He is able to stand while showering; today was our first time showering since surgery.  We continue to struggle pain when he is sitting in the wheelchair.  I Macgyvered a little something I called ‘marionette traction’ on Saturday to see if I could extend his time in the chair by taking the weight of his head off his neck (this is the way your mind operates post-Frankenhelmut….you can take the helmut off, but its presence is always there).  I would hold the traction up (rather awkwardly) while rolling the chair.  Given more time and tools, I was going to put a halter on my neck to hold up the marionette bar, but we didn’t get that far.  Ben was far less impressed by my Macgyvering skills  than I thought he should be.  (The main photo here is of Ben enduring my traction as it balances precariously on the top of the chair while I took the picture.)  Unfortunately, it didn’t really work, due to the agonizing pain thing still being present, but today we figured out a way to sit sideways to allow him more comfort and mobility.  He continues to work on stuff every day.  Even unprompted, I see him raise Lazy (his left hand who he now calls ‘Getting Strongy’) up to touch his bear.    Tomorrow it is supposed to be 22 here, and this little boy has not had fresh air on his face in over 60 days, so I think that might be our .

In order to get discharged, we have to be able to sit in a chair for at least four hours (probably more) to endure our flight on the way home.  We are slow and we are steady…checking off our list one thing at a time.

Bandages are off…

I’m really scared of getting bandages taken off.  I don’t like bandage takings off more than surgeries.  My mom says it’s because I am a hairy little monkey.  Last time I got them off I cried for a long time.  My nurse said that she would do her very best to take them off nicely and she would be super slow so it wouldn’t hurt too much.  She said it might hurt a bit though.

First she brought in some special squirt guns and squirted me all over until my back was really wet.

Then she put a nice warm towel on my neck for a while. Then she brought in some crazy sponge guys to help her with the job.  I was able to watch my crazy cat videos while she worked.  It took a long time, but it didn’t really hurt too much.  Now, I only have little bandaids everywhere, but they will come off all by themselves.    

Afterwards I was allowed to squirt her with the squirt guns.  It was super funny!  It looked like she pee’d her pants, and her glasses were all wet.  I laughed about that almost all day.   
Later when I was in physio we made up a spy plan to sneak up and scare her at her desk.  We sneaked up really quietly in my wheelchair.  I gave her a loud dinosaur roar right behind her.  She screamed really loud and said she was really scared. I might scare her again tomorrow.  

We watched Trolls today at movie day.  Raquel picked it again.  She would pick it 100 times if she could.  She really likes it.