Back in Montreal…

Ben and I just got back from a super quick trip to Montreal.  We left early Thursday morning, and we were back late Friday night.  It was a busy trip, but we did get a few opportunities to play tourist, which was awesome!  We got in after dinner on Thursday and had dinner with a friend.  Ben finally had an opportunity to have some poutine, which he thoroughly enjoyed.

We woke up on Friday and I called the hospital to tell them not to send a driver to pick us up.  I wanted Ben to have a chance to see the Metro (their underground train), so we walked down there.  We both enjoyed playing tourist a bit and headed over to the hospital.  When we were there, we thoroughly enjoyed seeing all our old friends.  It was wonderful that Ben was feeling so much better this time – we could visit everyone.  We visited our nurse friends and Ben’s new(ish) neck brace was immediately stickered up.  Because it was Friday (MOVIE DAY!!!) we were invited back to watch the movie and have some popcorn after our appointment.

Our appointment went ok.  There were no real surprises, but Ben’s surgeon did notice that he seemed to have a lot less mobility in his neck now than before surgery.  I have been seeing that too.  It appears that this is happening deep at his joint level…not sure why.  We will do what we can to loosen it up a bit, but a lot of this might be irreversible, which is a bit disheartening.   Ben did point out that he had scored a goal in soccer before surgery and another one after surgery, so everything seemed to be working ok.  We all laughed.  Ben said he felt straighter, but we all know that there are significant problems still.  Ben will require another surgery in a year or two to “level his head”.  I refrained from uttering a few “level-headed kid” jokes, which showed great restraint on my part.  So, for now we watch and wait.  This will give me some time to try to find some bio-med engineers willing to build me a vertebrae block with triple action shock absorbers….I’ve been watching Robo Cop spin-off’s and I have some awesome ideas!!!  So, for now we will continue to work with Ben on his physio – we do private physio now, and we are very  happy with our physiotherapist.  Ben is also wearing his neckbrace up to 20 hours a day without complaint, which is amazing. He seriously never complains. Half of the time his forehead is bruised, and we are always trying to switch things up so his skin doesn’t chafe.

After our appointment, Benjamin went upstairs to watch some of the movie and eat his popcorn.  It was a nice end to our day, then we raced away to the airport.  We got in last night (this morning) at about 1:30, so we are both pretty tired today.  All in all, it was a good trip.  Ben’s really been practicing his “bonjour” skills.

Anyways, on a more exciting note….there is a movie that was just released yesterday about a child with Goldenhar syndrome, which is Ben’s syndrome – but the boy in the movie also has a genetic mutation which they refer to as “lightning striking twice” in the book.  Anyways, I am excited/terrified to see.  It is called “Wonder” and is starring Julia Roberts and Owen Wilson.  I read the book this summer, so I am looking forward to seeing it, but I know it will be an emotional journey for me. I had to put the book in the freezer a few times, but I got through it.  I wanted to see the movie at the VIP theatre, so I could grab a wine (or two), but it’s not playing there.  #ChooseKind  Here’s the trailer.  Wonder Trailer

I have more updates coming up soon…lots of exciting things happening at our end, so keep checking!




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.  


Busy Days…

Ben is getting stronger day by day.  We have now renamed his left hand ‘Lazy” and Ben has to reach up and touch some hanging gorilla/bear to pay for special treats he wants…ie:  ipad = 5 Lazy touches.  It seems to be helping.  We have shortened our traction times to make it more manageable.  Today we were able to do traction four times for about 20 minutes each time.  On top of that, we are now walking to the bathroom any time we have to go, which is strengthening him little by little.  He always say “let me go by myself mom”, which I don’t do.  He’s still super wobbly, so any time he walks I follow him on a rolling stool with usually one hand on him.  Occasionally I will let him walk by himself, but I am always within arm’s reach.  It is very important that we prevent falls at this point.  We have been going out on little walks – less than 50 steps, and it is going ok.  Ben continues to struggle with severe neck pain, and we are doing a lot to help him strengthen his neck muscles in the hope that it will reduce the pain.  My greatest discouragement right now is the fact that I can’t really get him in the wheelchair for more than 10 minutes at a time until the pain becomes too great.  We are working, strengthening, and distracting, so we’ll see what happens.

We still do physio twice a day.  Our physio at this point involves a lot of stretches and strengthening exercises – legs and arms, and a bunch of neck stretching and strengthening exercises.  We combine this with walking exercises and sitting exercises, which are usually fun, silly, and distracting, but it only works if the pain is tolerable.  We continue to work hard at school too – Ben is having a spelling test tomorrow.  BUT – tomorrow is movie day, so he should have a little break in the afternoon.

Let me show you how I spent my afternoon –  beanbag surgery – I was a cross between Martha Stewart and Laura Ingalls.  It’s amazing the talents you can acquire when you are homeless, jobless. and bored.  It wouldn’t surprise me to be paged to the OR tomorrow to close someone up.  I (too) kicked butt today.