Surgery Postponed :(

Dad is still in the local hospital and was moved from emerg to a semi-private room yesterday. We are waiting for the doctor to come in with the latest set of results from blood work to determine if Dad can come home today or not.

We have the official word from Toronto.  The surgery that was booked for tomorrow is canceled.  We understand why, but this is devastating as we are now back to the same place we were weeks ago.  We once again will need to wait for surgery reshuffling to find out when it will actually take place.  We were hoping sooner than later.

In addition to ALL of these other things that are happening, my dad's hips are now beginning to show signs of pressure sores and skin break down.  This has never happened in this location before (and likely due to the H.O.).  Always something new....  Getting him home back on his own special mattress and in his chair again will hopefully prevent this problem from getting any worse.

Once again, thanks for all your support and well wishes.  Our journey is far from over yet and we couldn't do this without the love and well wishes from you all!

One Step Forward, Two Steps Back...

Dad managed to sleep during the night, which is awesome considering his feelings towards hospitals! The blood work that was done this morning shows that his white blood cell count is going down.  We are waiting for the next set of results.  At this point, the local hospital wants to keep him for one more night kept on IV to continue to attack this infection. Here, they believe surgery on Thursday is still possible.

In Toronto, it's another story. We talked with the secretary for the neurosurgeon today. This doctor wants to cancel the surgery, which means we'll go back to another waiting period for surgery reshuffling.  We also learned that the appointment with the anesthesiologist was scheduled for this morning and nobody notified us, so it was missed!  The local hospital is willing to transport him to and from Toronto for this appointment by ambulance if necessary.  So, we're not sure if surgery is a go on Thursday or when it will happen if it's canceled. The surgeon is in surgery today and when he comes out, his secretary will fill him in on the latest information and I guess we'll take it from there.

Not much else to report at this time. As we learn more, I will post it here.

Murphy's Law

Well the dad medical saga continues to develop, and in true "Gill-fashion", there are new complications that we have to deal with.  Last night Dad started to get muscle spasms and chills, which is usually indicative of some kind of infection within his body - somewhere. When my mom put him to bed, she noticed a reoccurring problem (completely unrelated to current A.S. or H.O. issues) that has resurfaced.  This morning when they got up, the problem seemed to be worse, which means a trip to the hospital for blood work was necessary...

At the local hospital, doctors took blood for testing and found his heart rate and blood pressure to be really low.  Dad was immediately given antibiotics intravenously.  Blood cultures came back with very high white blood cell counts so they are concerned that Dad can go into septic shock.  So Dad is now being admitted to the hospital and will remain over night (at least).  Xrays have also been ordered.

We also got a call from Toronto today and Dad's neck surgery has been scheduled for Thursday.  This is great news, but of course this is dependent on the infection.  They can't operate if the infection is present, so the doctors are aggressively treating this with very high dosages of medication. There's always something with us, isn't there?  Can't stay we aren't interesting people... ;-)

I will provide more updated information shortly as new tests and results will be coming in. Stay tuned...

The Verdict Is In

We just arrived back from Toronto to meet the neurosurgeon.  Dad's scan apparently has been the talk of the hospital this past week as different doctors have looked in and given their opinion on this very rare and unusual situation.  The doctor that inserted the Halifax Clamp in the back of dad's spine 17 years ago even had a look at the scan.  The neurosurgeon was very positive regarding the upcoming surgery.  He is hoping that dad may not require a tracheotomy (as long as there is no emergency ahead of the surgery). He will be on a respirator for the duration of the surgery and there is a slight possibility that he may have to be on one afterwards also.  He addressed our concern about more nerve damage to dad's spine during surgery and reassured us that he is operating far enough away from his spinal cord that there shouldn't be complications in this area.  To be safe, they will be doing regular nerve tests during the surgery to keep an eye on this.  The surgeon is literally booked up with surgeries until September so he has to do some schedule shuffling to fit dad in.  He expects the surgery to occur sometime over the next two weeks.  The next step here involves returning to Toronto to meet the anesthesiologist and go over the pre-op work up. The surgeon will need to be very careful when working around dad's esophagus as there may be scar tissue from earlier surgeries that cause it to stick to his spine.  He will be moving the esophagus to the side during surgery and will need to be extremely cautious as the one bone spur is sharp and sticking out enough that it could puncture his throat.  Despite this information, the neurosurgeon was very positive and left us feeling a little better about the actual surgery and related complications.  After surgery, dad will need immediate radiation to prevent the bone growth from rapidly growing back.

We also learned some shocking information today about dad's original injury.  The A.S. apparently caused dad's spine to be frail, (possibly) before ever being involved in his accident (although can't be proven), and the doctors are speculating that the blow during the car crash that severed dad's spine was most likely due to the level of A.S. development!!!  We thought the A.S. was a result of the paralysis and it looks like it really is the other way around!  Absolutely unbelievable!

I have included a photograph of one of the images of dad's neck. In the red circle you can see the bone growth sticking out of his C3-4 level vertibrae.  The yellow arrow points to the area that will be drilled and removed.  The dark area is the actual throat and you can see the opening that dad is currently breathing and swallowing through....see what I mean about a picture saying a thousand words?

Finally, The Phone Rings!

We just received a phone call from Toronto. Dad now has an appointment on Tuesday morning to meet the neurosurgeon.  He only sees patients on Wednesdays (due to his surgery schedule) so our appointment is scheduled at his earliest availability.  The E.N.T. secretary that called to inform us about the appointment reaffirmed our nervousness as she was just as shocked as us to see the results of the scan last week.  Dad's case is one of the top priorities in this department right now, so we expect that things will move quickly after this appointment.  Dad's physiatrist had been calling on our behalf to speed things along so we are grateful for that. We are glad that we no longer have to sit by the phone waiting for "THE CALL", so now we can at least go outside and enjoy the sunshine!  Thanks for continuing to check in on us.

We're Not Sure - Is No News, Good News?

Nothing to report fact wise.  We've been waiting by the phone for the past two days, waiting to hear from any one of the doctors on dad's team.  The waiting is very frustrating but not much can be done about that, so we are just trying to keep ourselves distracted. Visits from friends and family members has been helpful in that department.  We are too afraid to venture very far from home, so we aren't really able to enjoy the hot, sunny weather.  On a positive note, dad's pressure sore (an earlier issue) is now healed to the point where he can get up for longer periods each day!  Any new developments will most definitely be posted here.  Some people have been checking in and phoning, so I thought a quick "no news" update might be appreciated. 

A Late Night Phone Call

Mom had put in a call to dad's physiatrist (his main spinal cord doctor who manages his entire case) on Friday with some general questions that have come up since dad's appointment on Wednesday.  She returned that call late last night.  For more than 20 minutes, she spent time reassuring mom of the good things we are doing and answered some of our questions that were popping up. 

We learned that it's common for quadriplegics to have some form of H.O. or some form of A.S. but it is highly unusual and rare for dad to have both, and to the extreme that dad does.  His growth is progressively active, much more than seen with the average person in dad's condition .  In her words, he's a very unusual case (go figure)!  When the testing began over 18 months ago, the H.O. was present but it wasn't until near the end of last year that they started to suspect the A.S.  Further testing confirmed it. It wasn't until February that the throat became a concern when his neck swelled and he developed problems swallowing and choking.  The problem has developed rapidly since then which leads up to where we are today.

Speculating, she guesses that dad's surgery would take place sometime in the next week or two.  The doctors would much rather have everything planned out and go in to operate on their own time than to have to do an emergency surgery.  They will operate on the left side of his neck where he has the least amount of skin, tissue, and muscle damage.  The doctor called this his "virgin side"!  After she's looked at dad's scan and talked with the E.N.T. on Monday, she will contact us again with more updated information.  We'll know more then.

A Waiting Game

Not much has happened since our appointment in Toronto on Wednesday.  One of the decisions that needed to be made was postponing the radiation that was supposed to begin this week on dad's hips.  The radiology department contacted us today explaining that proceeding with treatment for the H.O. would be too hard on his system as he needs all of the strength that he can get for his upcoming throat surgery.

Mom also put a call into the E.N.T. specialist's secretary for a little information.  She was able to tell us that a neurosurgeon has come on board, being assigned to the case and he's looking at the files.  The next step will be an appointment for this surgeon to meet dad and go over everything.  Since it's almost the end of the day on Friday, I don't imagine we'll hear anything until next week....which means surgery is a while away yet....more waiting.  We just hope that it comes before an emergency tracheotomy is required as we would much rather all of dad's care be provided in the one hospital where an entire team knows the situation and is working together.

So for the mean time we can be thankful that mom is a great cook that uses lots of spices and seasonings so at least dad's liquefied meals taste better than they look! 

The situation as we know it ~ today

As many of you know, my dad has been dealing with some pretty major complications lately, namely issues related to heterotopic ossification and ankylosing spondylitus (basically he's in excruciating pain from bone growth, muscle break down/calcification, and bones/joints fusing together).  He's been seeing a team of specialists for the past few months and going through lots of tests.  He's been an interesting case study for these diagnosticians and at this time, all hands are on deck working on his case as he's a research study for the team.  It sort of reminds me of something you might see on "House" or some other medical TV show.  Quite unbelievable really.  My dad's issues do not progress the same as in normal, able-bodied individuals and the treatment options are limited for the same reasons.  There are many factors at play here.... 

All of this stuff has come to a sudden and complete stop in the past two weeks as we've discovered a blockage in my dad's throat that is causing serious alarm.  Things are happening quickly right now as this latest discovery is extremely life-threatening.  We are just returning from Toronto from our last set of test results from the CAT Scan done on Thursday, and the picture is down-right horrifying.  A picture certainly does say a thousand words and the image we saw is very alarming.  To put it simply, my dad has even more bone growth on three of his upper vertebrae that is causing a major blockage in his throat. The current opening is the thickness of a hairline and the doctor said today that he doesn't even know how my dad is breathing right now.  This is causing memory loss, sleep apnea, constant sleepiness, and an inability to swallow (he chokes on his own saliva now). He is now on liquids only (not even pureed foods are o.k. anymore as they might be too thick to pass through his throat opening).  This problem requires surgery (to remove the extra bone deposits) and radiation to keep them from coming back right away (and who knows what else at this point).  We don't really know the dangers due to my dad's extremely sensitive body system functions and have no idea how the recovery process will go.  The team of specialists will be getting back to us soon with a date for surgery, but in the mean time, we are staying close to home/hospitals as he may require an emergency tracheotomy at any time.   We were hoping for better news today so this blow has left us a little emotional.  We are trying to be hopeful but the doctors are trying to prepare us for very stormy roads ahead.  Continue to keep us in your thoughts.  As soon as we know more, we'll post it here.

Welcome to Our Blog

Our phone is ringing off the hook again, very reminiscent of 17 years ago when dad had his horrible accident that left him a quadriplegic.  Dad's recent medical journey is complicated and difficult to explain.  As you can imagine, it is very difficult to repeat this information over and over to our many family and friends.  We are so blessed to have you all in our lives showing so much support, so to keep you all in the loop, we decided to create this blog with updates as they occur.  Please forward this link to anyone who you think may want to know about my father's progress and current condition.  Thank you so much for your overwhelming words of support and well wishes.  We recognize how fortunate we are to have such a large network of caring people in our lives.  We love you all.  Updates to come shortly.