Flavour of the Week

We are all glad that dad is home and healing there.  He has been sick for 14 days straight, causing great concern.  Radiation, diet, and medication were all ruled out as possible causes so more tests were ordered when dad returned to Toronto on Thursday to have his trach stitches removed.  Although they tested for C difficile when he was in the hospital, they retested again.  We're glad the results came back negative for that once more.  We're not sure why this is happening but are relieved to see some improvement in the past day or two.  Hopefully it's just an infection that was taking a while to clear up.

Now we have yet another concern to add to the list.  The on again/off again, re-occurring pressure sore near dad's tailbone, that previously had him bed-ridden for two years, is back with a vengeance as of yesterday.  Mom checks dad a couple times each day and it wasn't there in the morning before getting up for the day.  By the time dad was transferred back to bed, it was broken open very badly.  We really hope this isn't going to be the big deal it has become in the past.

I write semi-jokingly: Who ever is poking that voodoo doll out there, enough is enough!!

Before and After Scans

BEFORE

 AFTER

A VERY BIG SURPRISE!

The door bell just rang. Guess who was on the other side?  No, seriously guess...

HE'S HOOOOOMMMMEEEEE!  :D

Good News!

The trach is out! We are so excited here this morning. An ENT just came by and took the trach out. Add this to the five hours sleep we got here last night and we are both ready to jump up and run around...well, wheel around in dad's case! Mom will be surprised when she arrives shortly. FINALLY some good news and progress moving us one step closer to going home! BIG smiles in this room right now! Dad was so excited he didn't mind the vampire lady taking blood this morning and adding one more hole to his vein!

Wasted Day

It was a tad frustrating in our world today. Dad's nurse this morning was not our favourite. She apparently doesn't read charts because she showed up with a suppository. Thank goodness I was here to stop her! She also wrote in dad's chart that he is not to get any meds tonight in his feed tube...unbelievable!!! She also forgot to inform us of his cancelled CT scan until after the porter arrived and dad was transferred onto the gurney and wheeling down the hall to go! My favourite part of the morning was when she tried to tell mom that mom would not be bathing dad because it was the nurse's job. Even after we told her that mom does this by herself everyday for the past seventeen years, this nurse was still adamant that she would be the one doing his care. Needless to say, it was already done when the nurse returned a little later.

The neurosurgeon was by today and within minutes of his visit, ENT was shortly behind. They did not take the trach out this afternoon. With all of the chest thrusts and suctioning required right now, they felt it best to wait until the morning when the emergency team is in and he can be more closely monitored. So the plan is to get the trach out in the morning and then meet with the speech therapist for his swallowing assessment. It's looking more like a Saturday release now. We'll hope for that.

We're getting ready for some sleep here tonight. Now that dad can talk, he won't shut up, so I might have to tape his lips closed here soon. Just kidding. We didn't sleep much last night because just as we started to doze off, someone would come in to check vitals, take blood, give meds, empty IV, etc. Hopefully tonight will be a different story.

Thanks to all for continuing to check in. Dad appreciates all the comments you've been sending.

P.S. Dad says if he stays in here much longer, by the time he does get released, all the water he drinks will pour out all of the needle holes he's been pricked with, it will look like a sprinkler.

New Day, New Dilema

I just sent mom home from the hospital. She was waiting around to find out the results of the abdominal x-ray that occurred late tonight and to see if a CT scan would take place tonight as well. Dad's stomach has now distended and was bloated to the point where it was putting pressure on his diaphragm and making it difficult to breathe. The nurses want to get 7 cans of feed in him a day but he's not even tolerating 3 cans. The x-ray shows enlarged pockets in his colon but they are going to wait until morning for the CT as dad had fallen asleep and they don't feel it's an immediate concern. I am beginning to think that dad is just looking for attention!!! If only this were true.

His trach is currently plugged and if he makes it through the night without any complications then it could possibly come out tomorrow. After that, he has to stay another 24 hours for swallowing assessments and monitoring. We are still hoping for a Friday release but we'll have to wait and see what happens with his lung, and now his stomach.

The unit manager and nurse practitioner have been checking in many times today with mom. It is clear that mistakes were made and dad's case "slipped through the cracks" over the long weekend. Dad was supposed to loose the P.S.W. night sitter but one has been assigned to him anyway. I think they aren't wanting to ruffle any feathers with us right now!

Always Something

Now that the long weekend is over and regular staff are back around, everyone is weighing in on what's been happening this past weekend.  The neurosurgeon was surprised to see dad still here as he had ordered ENT to change the trach on Saturday (as we were originally told).  He wasn't sure why the respiratory therapist was making these decisions because the purpose of dad's trach was the throat surgery, not a respiratory condition - an ENT responsibility.  So within a couple hours dad's trach was changed right there in his room.  Mom plugged the hole when I spoke to her and hearing his voice simply say "Hi Kim Kim" was the best sound I've heard in weeks.  Finally some progress here.  We are hoping that this trach will be removed by Wednesday.

Last night was another horrible night with dad.  He required lots of suctioning and chest thrusts so an x-ray was ordered.  Today we learned that part of dad's left lung has collapsed and he also has pneumonia.  High doses of antibiotics were immediately started intravenously.    Dad's "food" has finally been changed and we think the reaction to the old stuff is finally over.  What a busy couple of days it's been for my mom who's been there for 36 hours straight (without sleep).  Brad is taking over the night shift tonight as there is not a P.S.W. assigned to dad anymore (as he's out of the critical stage).
What an awful week but the end is in sight...just lots of hurdles to jump before we get there. 

More Delays

A discouraging day for mom and dad today as a visit from the respiratory therapist informs another step on the road to speaking... The trach dad currently has in does not have any holes to allow air flow when plugged which means they will have to change his trach to one that has the tiny holes before they can cap it. This means dad will be in the hospital longer than we thought.  Dad has also been sick all day, reacting to the feeds, a new issue to now deal with. What a crappy situation.  Due to this latest development, mom will be staying with dad tonight.

The good news (because we have to find some in here somewhere) is that dad did not require much suctioning today.  Also, the new pain meds are allowing him to sleep and relax a little more.  Thank goodness for that.

Recovery Mode

Dad was pretty out of it for most of the day. He doesn't even remember talking with my two aunts that came to pick me up this morning. The doctors reassessed the meds he is taking for pain. No more morphine! The effects of this drug took a while to wear off today, leaving dad confused and at times upset. He was so out of it today he didn't wake up while being transferred back to the air bed! It's possible that he might get his trach corked tomorrow but I will believe that when it happens. I expect dad to be here in the hospital until at least Wednesday or Thursday. I am back in staying with dad now until my brother gets here to take over the night shift. He is asleep now and hopefully remains that way. The doctor that saw dad today said that dad needs a good two full days of solid sleep to help build back some strength. It's going to be so hard to leave here later tonight to head back to my own home. I'm not sure how I will pull out of personal mode and back into professional one...sigh. Can't wait for this ordeal to be over!

A Hard Days Night

It was a brutal night here with dad. I'm not sure why but anxiety was high and sleep was not happening. He needed to be suctioned quite a bit and the meds weren't doing anything to relax him. In fact, it made him more agitated. Most of what was going on was "in his head" and I wonder if he should be getting morphine anymore because it's messing him up more than it's helping. At 5:15 when he was given his regular meds, he was finally able to relax and has now been sleeping for the past two hours. He is so exhausted... Sure hope we hear something about this damn trach today.

Another Day Down

Last night dad slept the longest since he's been here. I'm glad that I stayed as he was able to relax enough to rest.  Not much occurred here today.  There was less suctioning required than yesterday.  We brought in his wheelchair but he didn't get up today.  It took a really long time to run through the feeds today as they had it set up to run super slowly. Still no word on the trach at this point. It's all a waiting game over the long weekend.  I am staying with dad again tonight in hopes that he will get more sleep. We will keep you updated as more information becomes available. Thanks for checking up on us.

♬ I Think It's Going To Be A Long Long Time ♬

The charge nurse (after her meeting with mom) arrived with 4 signs to post around his little space in his tiny room that informs all staff that they need to move his foley catheter when he's turned. This morning when we arrived it was on the opposite side...a BIG NO NO as it could pull and damage his bladder.  This is one mistake that definitely won't be repeated.  His med order was actually correct this evening so hopefully this is finally sorted out.

Dad had a choking/coughing fit this afternoon and required a great deal of suctioning.  We were about to call in the respiratory therapist but were able to calm him before that was necessary.  His hips were really bothering him today and he felt it was because of the air bed.  Although he's on one at home (a different kind though) it didn't seem to be working. We're not convinced it actually was the bed, but to settle him and try something new, we requested to have him transferred back to a regular one.  We'll see if this is a decision we'll regret later or not.  He's very paranoid about his trach and all day has been worrying about the night shift.  A different P.S.W. is here now and he's afraid that she won't understand his requests as nobody seems to be able to read his lips.  He has requested that I stay the night with him and how can I not comply?  The fear and anxiety is worse than the pain and sore body he's experiencing.  If I can ease his mind and reassure him that things are ok, then that's what I'll be doing.  That being said, I think tonight is going to be a long, long night.  Cue the music here. ;-)

We can only hope that tomorrow will be a better day.

About To Blow A Gasket

I apologize in advance for the emotionally charged post that you are about to read.  I also want to preface my rant by saying that I have great respect for this facility, the programs, and staff here at this hospital (although it will not appear so when I begin venting). This post will most likely be much more "personal" than "factual"...

We still have not sorted out the med mess here.  Despite many discussions about dad's bowel routine (we call "treatment"), they are still getting it wrong.  A 'treatment' usually takes 2-3 hours and occurs every other day, and is hard on dad's hips/butt (due to the H.O.). Since dad hasn't eaten anything all week, mom does not want to do a 'treatment' until Saturday.  Why put him through that when there won't be any result?  It took almost 3 days to get his feeds sorted out!  We've discussed this with each new nurse and all other people working on dad's case the past few days since coming out of ICU. Last night they gave dad one of the meds he takes the day before 'treatment' day.   Mom caught this but was too late (and not that big of an issue).  She stressed at that point that there WOULD NOT be a 'treatment' done until Saturday.  Today just after we arrived, the nurse shows up with a suppository and was ready to begin a 'treatment'!!!  Insert choice four letter words here.  We don't understand why these communication issues are happening.  EVERY appointment over the past 2 months (urologist, radiologist, neurologist, E.N.T., etc) has started with sharing the med list/routine.  Every single person we've been in contact with here has heard my mom talk about this.  It's so hard having to watch my mom fight and go over people's heads to make sure my dad is getting the (individualized) care that he needs.  The common response is "that is our routine here" but dad is not "routine" in any sense of the word.  Anyone that knows our situation knows that anything and everything that can be unique and unusual occurs with my father.  We feel like we are always bitching and coming across as nasty or mean.  It's not enough to have to deal with the physical and medical issues, we also have to argue, rant and rave, and get loud for anyone to listen.  It's awful.  This is not who we are...but who we are forced to be to advocate for dad.

Dad had a horrible night and did not sleep.  The poor man is so exhausted it's not funny.  As soon as we arrived this morning and dad's security blanket (a.k.a mom) was here, he could relax and fall asleep.  For the past 3 hours he has slept the most (and deepest) since surgery.  The wonderful P.S.W. stayed longer than her 12 hour shift until we arrived because dad had such a hard night. He said that he wouldn't have made it through the night without her.  We are soooo grateful.

The respiratory therapist was here this morning and deflated the balloon in dad's trach.  This is one step closer to being able to talk again.  Mom is currently having a meeting with the charge nurse to go over dad's file and (hopefully) get everything sorted out.  We hate having to 'go over heads' but these mix ups need to stop and we need to stop repeating the same information over and over and over.

Stay tuned to see how our "drama" unfolds...

A Heavy Heart

It was awful leaving dad tonight.  The effects of the surgery and radiation (as warned) kicked in late this afternoon and dad was very uncomfortable and in pain.  It's so hard to see him this way.  He's very unhappy with his new specialized bed. We're not sure if it really is the bed or just the discomfort he is feeling from the surgery and radiation.  I wouldn't be surprised if we have to change back to the regular bed tomorrow.

After discussions with literally 10 different health professionals (nurses, dietitian, pharmacist, etc) we STILL had mix ups with meds tonight.  I'm not sure why this is happening because we've shared the med list so many times, with so many people, that it shouldn't be a concern.  This is when I am extra thankful that my mom is so "in tune" and knows her stuff because she caught mistakes simply by the colour of the liquid (since his pills are still being crushed and added to liquids).  It's very frustrating and makes us fearful to leave him at all!

Thankfully the same P.S.W. that was with him last night is there again tonight. She's really nice and dad likes her.  This is reassuring to us as we left him with lumps in our throat and tears in our eyes.  I have a feeling that the next couple of days are going to be like this...not fun.  :(

A Special Message from Dad

This message is specifically for the Montreal fans (you know who you are) that have been posting comments on this site.  Dad says STOP SWEARING...don't use fowl language such as the H-word!

Sense of humour in tact? Check!

So Far A Much Better Day

Mom and I arrived this morning and were very pleased to see dad looking relaxed.  He slept through most of the night and has had a few naps throughout the day.  Lip reading is a little easier today as he's more alert when he's trying to talk to us.  The neurosurgeon came by today to talk about next steps. Dad's trach SHOULD come out on Saturday and then he needs to stay for another day to be monitored and assessed for swallowing....but this is the long weekend coming up and many of the specialists aren't in the building, so we're not exactly sure if it will happen on this schedule or not.  We brought in dad's wheelchair today and got him up for half an hour.  It was good for him to get a change of position and scenery.  His specialized air bed arrived this afternoon so we are just about to get him back in that bed.  His blood pressure has significantly dropped since getting up so we need to limit the time he's out of bed to short periods for now. 

Mom continues to advocate for dad's care and each new nurse assigned to the case has to get the run down. It's amazing how many times she's had to share his med list since being here....pre-op, recovery, ICU, and now each nurse on the ward.  The pharmacist just left and we THINK we've gotten it all straightened away now.  It's been a struggle because one of dad's meds that he's been on for 17 years can not be stopped and he wasn't getting it....now he is thanks to her. 

We've also had to speak directly to a dietitian because they still haven't been feeding dad.  He got 15cc's per hour for a couple hours last night (whoop de doo) and then we had to get them to turn it off because he can't "eat" lying flat. They don't seem to understand the issue with dad's hips (not being able to sit up on an angle due to pressure on the hips) and thought he could be on continuous feeds throughout the night.  The neurosurgeon stressed on day 1 that he needed nutrition and it's taken mom on their case to finally get this situation addressed.  He will get increased dosages tonight until we leave and then tomorrow they will start a feeding routine a little more comparable to his regular eating schedule.  Progress is being made.

We also had another "reunion" today as dad's first physiotherapist from 1994 stopped by to say hi.  Dad recognized her voice before he even saw her.  She joked that dad might want to punch her instead of visit as dad wasn't the kindest to her back then during those traumatic times!  Physiotherapists always get a bad rap (as they push the patient in order to improve) and anyone that knows my dad knows how uncooperative he could be back then.  Dad was really glad to see her.

Tomorrow they should be reducing the air cuff in his trach and hopefully in a day or two we can cork the trach so he can talk for a while.  This process will be much easier for him (and us) if he could talk.  We are all pretty tired today...I guess the week's adventures have worn us out a little.  If dad's bed were just a little wider I think mom and I would both curl up and nap with him!

The Fun Never Ends

It was a stressful afternoon here in our world.  My poor father has been transferred so many times today for various tests that I'm sure he must feel like a sack of potatoes.  He has moved from the intensive care unit and is now in a semi-private room on the ward.  Prior to getting here though he went for radiation and then his CT scan.  Radiation was very hard on dad as he dealt with anxiety attacks.  It was really heartbreaking because his head had to be bolted down (with the mask) and that didn't go over well.  His neck is swollen and very sore from the surgery and the radiation today and he's getting frustrated not being able to communicate with everyone.  He's been really patient with our lip reading but I know he's getting tired of this. Although it's good that dad is no longer "critical" and requiring intensive care, he is not comfortable with this move and is in fact, more nervous than yesterday.  In I.C.U. he had 24 hour care/supervision.  Here on the ward he is lucky to see anybody as the nurse is assigned to many rooms.  They really aren't prepared here for him here - no meds, no food, no suction machine... but don't you worry, the red roots have come out and mom has gone into 'advocate mode' and things are beginning to change.  Her reputation has proceeded her as the nurse said she was warned!  The nurses in the I.C.U. explained to the new staff that mom is not just any relative and that they need to a) take her seriously and b) listen to what she has to say because she truly does know best what he needs.  Dad is already beginning to freak out about us leaving tonight because he can't call anyone and can't use a call bell.  We THINK (not sure yet but) he might have a P.S.W. sit with him throughout the night just in case he needs anything.  This would make us feel much better.  I can't imagine how helpless he feels.  We can't stress this enough to the nurses on this floor to get them to understand that he can't move, can't talk, can't call for help, or can't even scratch his itchy face (which is driving him nuts - because of meds and tape from tubes).  The trach is really bothering him this afternoon and he can't seem to get comfortable.  We are also very concerned about skin break downs.... when we left last night we told the nurse not to turn him if he was sleeping (to not wake him up because he also hasn't slept in days) but that he couldn't stay on his right side all night (which is already a problem with the H.O. that hasn't been treated).  The nurse didn't turn him AT ALL so he was on this hip from the time we left until we got back.  Again, a case where mom knows best and people need to listen.  This isn't a regular, able-bodied person we're dealing with and the usual, regular routines are not always in his best interests (which we've seen and dealt with MANY times).  My mother should have an honorary nurses degree as she has provided most of his care here (which is nothing new). 

The good news is that tomorrow we need to bring dad's wheelchair in and begin to get him up for a short periods.  I think this will do wonders for him.  He also has internet access so in a day or two when he's up to it, we can bring in his laptop and he can touch base with you all himself.

Another Day Begins

Mom and I arrived at the hospital early this morning and were pleased to see which nurse was assigned to dad today. She's a real sweetheart and dad is very comfortable with her.  We were also happy to see that the drainage tube in dad's neck was removed throughout the night (this is really good). We practiced our lip reading quite a bit as dad had lots of questions and concerns he wanted us to address.  His demeanor changed once mom was with him, it's like she's his baby blanket!  Now that she's here, he's able to relax and doze off a little.  I'm sure it's just reassuring for him to know that the person who knows his needs best is nearby....and he's a suck!! Just kidding... I can't imagine what this is like for him.

We went to the cancer center this morning to be prepped for radiation that will occur later this afternoon.  It was kinda surreal to watch these women transfer dad on what is the largest slide board that I have ever seen!  Dad needed to have a special face mask made that is molded to his face that will hold him still and in place during the radiation to make sure it targets the right area.  The process was quite fascinating actually.  The porter that returned dad back to the ICU was most likely a race car driver in a former life as he almost hit people in our path and dinged a few wall mounted items along the way.  Always interesting!

This afternoon dad will go for the CT scan and then on to radiation around 5:00.  They will only be doing one round of radiation treatment this time, again, with the goal to shock the spine so the growth won't rapidly grow back.

We also saw one of our first case workers today that worked with us back in '94 when dad was first admitted after his accident.  It's becoming a bit of a reunion in here!  Mom is currently waiting for "the team" to come by and update them with any new information so I will most likely be posting at least once more later today.  We have been telling dad about all of your comments on our blog and Facebook and I know that means a lot to him.  We feel your love from here.

A Very Long Day

Mom and I just got to a hotel here in Toronto that is 5 minutes from the hospital. When we left dad he was very nervous about being left alone and not being able to talk.  We don't blame him one bit.  It's not fun with a tracheotomy and trying to read lips (that pronounce less and less with the addition of each medication dosage).  It was really difficult to leave him but I had to get my poor mother to a bed because she hasn't slept more than 3 hours in the past few nights.

We had a little drama with feed (NG) tube insertion this afternoon, having to give it a second try when the first one was misplaced (most likely due to dad being tense, anxious, and not swallowing).  The second time around we loaded him up with med (he was much more relaxed) and it went in without issue.  The trach is a "blast from the past" and I realized how much I didn't miss that gurgling sound when he needs to be suctioned.

Dad is currently in an intensive care unit that he was in 17 years ago...funny thing...one of his old nurses still works there and remembered him!  She even remembered that we used to live on Balsam Lake!

Considering it all, dad's spirits are pretty good. He's been patient with our poor lip reading skills and has tried to crack jokes for the nurses (who haven't quite gotten his humour yet).  

We'll know more about his recovery and related concerns tomorrow. We plan on being back at the hospital bright and early so we're gonna catch some shut eye.  More updates tomorrow.... Thanks for following along on our journey - never a dull moment!

Out of Surgery!!!

Dad's surgery is officially over!! He is now in the recovery room and simi-alert. We were able to see him and learned that we're much better at lip reading this time around (those of you that were around 17 years ago will know what I'm talking about).  His neck is very swollen and he'll be undergoing lots of tests over the next 24 hours to make sure everything happened the way it was planned.  Thanks to all who have been checking in on us today. We're glad the main part is over and we can focus on the recovery.

Neurosurgeon Update

The neurosurgeon just came to talk to us about the progress of dad's surgery.  He is done his part of the work. The bone has been drilled off of dad's C3/4 5/6 vertibrae.  They did x-rays to make sure they got enough of the growth.  They will do a CT scan later tonight to verify this as well. 

Dad is still in surgery now, the E.N.T. has taken over now and is changing the breathing tube to a trach.  Dad did not need to be intubated as expected so this is a relief because this was dad's greatest fear during this process.  This part of the surgery should be over within the hour and then he's off to recovery.  We should be able to see him in a couple hours.

The neurosurgeon claims that we will most likely be here until the weekend when the trach will come out - so he will not come home with a trach - yeah!  We'll know more with the CT scan later tonight.  I will update when there's more info.

We're Here

It's now 8:30. After a very early and quiet drive in, we are now waiting in the surgical waiting room as dad has gone in.  They had some difficulty inserting the IV so we were just a bit delayed but we assume he's being operated on now.  We left him a hour ago as we weren't permitted to be with him in the operating area beforehand. So now we wait...

Tomorrow morning dad will go for radiation planning at 9:30 and then his first round of radiation should occur between 4-5 tomorrow.  It's important to do radiation right away to shock the bone from growing back. 

It's going to be a LONG day here in Toronto for us.  We'll keep you posted as information becomes available.

Wish Us Luck

Well, tomorrow's the big day. We just heard from Toronto and the surgery will take place early in the morning (around 8:00) which means we need to be there by 6:00.  It's a little nerve wracking thinking about what is to come.  We are trying to reassure dad's (and our own) anxieties and fears.  It's understandable for him to be worried.  I will try to find internet access later in the day to update the blog and inform everyone how things went.  Thanks once again for all of your words of encouragement and support.  Please continue to pray for dad tomorrow and the days to come.

Getting Closer...

Mom and Dad headed to Toronto today for Dad's pre-op appointment with the anesthesiologist.  Dad underwent more tests (E.C.G, blood work, chest x-rays) and learned a little more about the upcoming surgery next Tuesday. At this point we don't exactly know when the surgery will occur, the hospital will let us know on Monday afternoon.  We did learn that this surgery will take anywhere from 4-6 hours, obviously depending on complications that could arise.  There's not a whole lot to share with everyone right now, just know that we are still hanging in there, and counting the down the last few days before surgery occurs.  For now, expect that no news here on this blog, means good news!

Surgery Has Been Rescheduled

I guess our frequent phone messages have sparked a response from Toronto.  The neurosurgeon just phoned with information about surgery.  There are a few factors effecting the scheduling of the date. The doctors need to make sure dad's infection is completely gone from his blood stream before they even consider operating.  Mom will be taking samples to their family doctor tomorrow so that Toronto can get that information ASAP.  The neurosurgeon is on holidays next week, as is the E.N.T. that are working together to perform various parts of the surgery.  The E.N.T. will need to give dad a tracheotomy prior to the neurosurgeon doing the "scraping" part of the surgery.  The E.N.T. will also finish up the surgery and work around dad's esophagus (as well as the radiation that needs to immediately follow).  There is concern about dad's fibre optic nerve collapsing, so the tracheotomy will ensure dad has an airway in the event that this happens.  If an emergency tracheotomy is required prior to surgery, we are to bring dad to Toronto immediately for the team there to deal with the fall out.  Even if the E.N.T. and neurosurgeon aren't physically there at that time, their team of colleagues are aware of dad's case and can make appropriate plans.  Dad will need to keep the trach in after the surgery until all swelling is down and they are convinced that his airway is safe on its own.  If surgery goes well, they are predicting that dad should be able to come home (with trach) within a few days after the surgery (best case scenario...that we're choosing to believe will occur).  As of this moment, dad's surgery has been scheduled for August 30th (3 weeks from now).  Although we were hoping for much sooner, we are finding some relief knowing that a date has been set.

...And Waiting...

Patience is fleeting here in the 'shwa, and frustration is growing.  It has been 6 weeks since the scan that alarmed us to this time-sensitive throat concern and we STILL don't have a date from Toronto for surgery.  With each day that passes we are feeling more and more trapped here as prisoners in our own home.  This truly is the best place to be (next to already being in a hospital) in the event of an emergency with dad (due to proximity to emergency services) so we really don't want to go anywhere.  We are feeling like our lives are on hold and it's not a situation where we can "just go on with living" because it only takes a few minutes for the worst to happen and we certainly aren't ready or willing to take that chance.  When we had our appointment 5 weeks ago the doctors were very concerned about the rate of growth on dad's vertebrae, and having seen the scan, we can't get past our fears of what is to come.  Although we are afraid of this surgery, we are more afraid of what it means to NOT have this surgery (apparently breathing is kind of important).  Mom has been placing calls to the hospital for the past few days and hasn't really gotten anywhere.  Messages have been left but no calls have been returned.  It seemed like everything was in hyper-drive a few weeks ago and now has stalled. We understand that dad's hospital stay a couple weeks ago set us back and that it is summer holiday season, but this is a life-threatening condition and we fear we don't have time to spare.  The severity of the situation increases with each passing day.  Not sure how much more of this stress my poor parents can take.... We also learned today (after talking to the receptionist) that the E.N.T. (who is one of the doctors involved in the actual surgery) is on holidays for "the greater part of August"!!!  ARGH!!!

Thank you for continuing to check in on us and sending us your positive energy. We need all that we can get these days.  I will continue to keep you updated with any information as it becomes available.

Still Waiting...

Nothing to report as we are still waiting for our new date for surgery. I leave for a conference on Thursday and will be without car, cell phone service, and internet access from Friday to Sunday, so I really hope we hear something from Toronto before I leave. 

I know you've been checking in so I thought I should add SOMETHING.  On dad's facebook page Valerie made a comment about "when there's a GILL there's a way" so I thought this would be a cute edit to our blog title.  What do you think? 

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.