A year ago today…

Ben’s recovery from surgery a year later.

Well it was exactly one year ago today that Benjamin had his first spinal surgery (installation of the halo and placement of two anchors on his lower spine).  I remember lying awake at the Ronald McDonald House the night before the surgery wondering if I would ever be able to snuggle with him again or if he would be all rigid and rod-like.  Well…I am happy to say we are still snuggling (note to new patients – you will definitely NOT be able to snuggle during traction time).  Ben is learning to skate again (thanks to his teachers who were supervising him and had a few heart attacks along the way!)  He is also playing indoor soccer and dancing…well…sort of…  Anyways, here we are a year later and here’s what’s happening in our life.

  1.  Ben has fully recovered from his surgery.  As mentioned before, we will probably have to go back in to do another osteotomy, but for now he is doing great.  He only scored one soccer goal before surgery, and he has now scored two, so there are obvious benefits to the surgery.
  2. In August he started wearing a new Torture Device shoulder harness/neck brace.  Our intent was to straighten his cervical spine as much as we could in hopes that it would a) minimize his head tilt  b)improve the way his bones grow and c)give a straighten spine for the surgeon to operate on in the future.  We also began aggressive physio too at this time to try to compensate for loss in his range of motion in his neck.
  3. In December we stopped because it appeared that his body was compensating so much that we were screwing up his shoulders.  (Imagine shrugging then dropping one shoulder…that was pretty much what it was starting to look like…so, we retreated, regrouped, and replanned.
  4. In January we came up with a New and Improved Torture Device neck/head brace that goes all the way down to his waist and doesn’t allow his body to compensate.  It was very painful for him initially, but we weaned him in a few hours a day with LOTS of Tylenol when needed.  He can now wear it for up to 20 hours a day.
  5. In January we also STOPPED physio….stopped you say.  Yes, we stopped because the orthotist wanted us to wear the brace as much as possible, and the physiotherapist wanted us to have as much range of motion as possible.  The two sides were counter-productive.  So, we decided to put off the physio while we are working on the bracing.  I think we are starting to see some progress!
  6. We got the “go ahead” to implant his new BAHA hearing aids.  We are going to wait for a while though because I want to be pretty darn sure his hearing is consistent in them.  He has a history of inconsistency, so I think we can wait for a few more tests.
  7. We received a “WISH” from the Rainbow Society of Alberta, so we are excitedly getting ready for that and filling out forms and such.  I can hardly wait to tell you more!  The kids were OFF THEIR ROCKERS when they found out!  I will definitely write more about this!

Anyways, that’s what has been going on this last little while.  Ben is still loving life and is as awesome as ever!

Ummm…yeah….pretty recovered!

Ben - new brace
Ben getting fitted for his new torture device brace
List on drawer at Glenrose A sign I noticed on the drawer in the casting room while Ben was being fit for his new brace… can you see why I thought it was weird?

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.  

 

Back in action….er…I mean traction!

First of all – just a little housekeeping about the blog – people have been asking me and you DO NOT need a wordpress account to follow the blog – just ignore the line that asks for that.  You can do it just using your email account.  If you can’t get that to work, you can hit the contact button and just send in your email address and a line that says “follow” and I can generate an invitation email.  When you do this, it should generate an email whenever there is an update.

So, the last few days have been a little concerning.  Ben’s medical team noticed yesterday that he seemed to be much weaker on his left side than his right.  This seemed to be a decline from the weekend.  Because his surgery was done on his spine, it is important to keep a close eye on things like this.  Beyond his weakness, it was obvious that his head appeared to be sitting quite crookedly on his shoulders, which as a professional worrier caused me no small amount of concern.  There was no real movement in his head and neck.  Anyways, there was no hesitation from our team to order xrays and CTs to quickly rule out surgical problems and to try to determine the cause.

The good news is that Ben’s xrays and CTs look really good – straight and awesome!  There is a small possibility that there could be a screw a microbit (yeah…that’s a word) out of place, but his symptoms are not really consistent with this possibility at this time.  So, we think that maybe the problem is that we have a little 6 year old boy who had a very grown up surgery and hasn’t used his neck in 7 weeks.  It’s fairly probable that he could be having muscle spasms and all kinds of tighness and soreness as a result of this – not to mention that he has been crooked for 6 years, so that is his normal way of holding himself.

So, we are now using a variety of strategies to get him through these minor complications.  First off – physio!  We are working hard at exercising and trying to move forward a little bit each day.  We are doing our best to strengthen all his muscles and make sure that his “lazy hand” does his share of the work too.  Right now when I get him to grab my fingers and squeeze them – his right hand is weaker than it was a few weeks ago because he is weaker overall post-surgery – I can feel a fair squeeze.  His left hand is far weaker than that, and it is sometimes difficult to even determine a squeeze.  OT is also working hard to give us the tools we need to get back on track – we received a new smaller Ben size wheelchair yesterday with a back that can recline.  This is a start for us, but Ben still has a very difficult time sitting up – even with the recline.  They have also supplied us with a small walker and have set up an entirely unique non-invasive traction on his bed.  Ben seems to like the traction at first, but he is having a difficult time maintaining it for long periods of time.  I’m not sure why – it might be that it is stretching the muscles on his neck and they spasm or hurt over time.  We’ll try to figure that out more tomorrow.  Everyone here is working on solutions to get Ben up and moving, and he is definitely doing his part too.  He does walk a little bit now; although it is difficult for him.  Our physio hides racecars within 20 feet of our hospital room and Ben walks (with his walker and some head support) to find them and then tries to sit and test them to see which is the fastest.  We will continue to work hard and make small advances whenever we can.  This is the tough part now because everything hurts!