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?