The greatest gift - January 29, 2013

January 29, 2013 - Thank you

For one family, it is a date of sorrow.  It is the day that their loved one left this world, but left it with a wish, with a request that any useable organs be donated, so that another can experience more life.  

For our family, this date is a rebirth.  It is a father able to be there for his children, and a husband (fiancé) able to walk, once again, hand in hand, with his girl, for an evening stroll.  

The magnitude of this gift is not lost on Keith.   There will never be enough thanks in this world, and each and every breath he takes, is a breath of gratitude.  

This post was begun on January 29th, 2013 - Over two months ago when Keith had just received his gift.  The timing in posting it now, stems out of respect for the family that have lost their loved one, and because these last two months have been focused on taking care of this precious gift, and ensuring that it continues to keep Keith as healthy as it can, for as long as it can.

I have come back to this post so many times, with the hopes that some lightening bolt will hit and I will have the perfect words.  It is when I wish we had a language that had 1000 different words for thank you, and one word was just right.

Our thank you encompasses all of the above and more.  Our thank you sends prayers and hugs and blessings to the family who have lost their loved one.  Our thank hopes that you take comfort knowing that this gift will be cherished.

Keith and I want to let you know that we will always feel joined with your family.  Keith is not a writer, but we have discussed how to say this, and I hope that I do justice to his thoughts here.


When I wake, in the first few moments my thought is one of peace.  Peace that I had not known for many years.  I feel a level of comfort that my body had not been allowed to feel, and each fibre and nerve and muscle in my body is responding with a resounding chorus of thanks.  
Breath is effortless.  I confess to having moments where I don't even think about breathing, which for someone with less than 10% lung function is an impossibility.  
I love my new lungs, I so appreciate that you supported your loved ones choice, and my children, my friends, and beautiful fiancé thank you for saving my life.  

Sheer joy

Home at last! Settling back into new life

Saying goodbye to 7

February 20, 2013.

    

 After nearly 3 months as an inpatient, either at WestPark Healthcare Centre or at Toronto General Hospital, and 12 days on a ventilator prior to receiving his gift of life, Keith was finally allowed to go home!  It was so nice to be able to walk out of hospital, and into his home with NO walker!  Our first night home, Keith really wanted to have Il Fornello pizza, so we went out and had a lovely meal with my daughters, Emma and Kathleen.  

In home pharmacy!

CBC interview on Saturday morning.

Relaxed breakfast

 On Saturday morning, the CBC came to do an interview and finally get a chance to chat with Keith outside of the hospital.  Keith did an excellent job.  See the interview here (15 minutes in).  

Our new reality, for a few months, is 3-4 regular trips in to Toronto a week for physical rehab, doctors visits, testing and follow up appointments.  Keith is monitored very closely by his doctors, and does self monitoring every day through spirometry readings, temperature readings, and everything is charted.  If there are any noticeable (10%) up or downticks in anything, he is to go to the hospital immediately.  The medications that he takes to suppress his immune system, need to be taken at the same time each day, twice a day, for the rest of his life.  

First workout day after transplant

Treadmill.  1.8 as opposed to .6.  He rocked it.

Keith and Dr. Waddell?  Need to organize
a proper meeting :)

Running into Derek from Spiritual Care

Catching up with the team at Credit Valley
Physio Rehab

 It has been so wonderful to meet up with many of our friends, and people who have helped over the months and years.

Yep, another front page from our local paper.  

Vince - the Physio master in MSICU.
This man is awesome!!!

No post would ever be complete, without thanking the one incredible person who made this all possible.  You made a choice, your family supported that choice, and not one moment, not one breath goes by that is not filled with gratitude for your most precious gift.  Thank you, from the bottom of our hearts.  I can only hope that your family can find solace in knowing that Keith will take amazing care of this gift.  

If you would like more information on how to ensure that you are registered in Ontario as an organ donor, please go to beadonor.ca.  Or visit Keith's Facebook Page  and check out the about section for more links in other provinces and countries.  

Two weeks post transplant. Ups and Downs.

The week in pictures (and lots of info)

Swallow xray video

To bring you up to date, I thought I would post an update with some of the things that have happened this past week.  Keith was assessed with a swallow test a week ago to see how he was swallowing (after having been  intubated for a week, and on a trach tube after that, it was imperative that he was swallowing food, and it was going down the right tube!  All looked pretty good, except for a few bits that weren't making it to the right spot, so he was put on "similar consistencies" for food choices.  No nuts for this guy for a while!

On Friday, February 8th, the skies opened up and covered the city with white.    It was beautiful to watch, but came at a time when Keith really needed me close.  Keith was 10 days post transplant, and really beginning to feel the pain of his incisions and staples.  Medications were still being adjusted, and gaps in pain meds really left him uncomfortable - no wait, in tons of pain.   My car was in pain too, as you can see, and THAT was lots of fun to deal with at the end of a long day.  (I can complain too, right?)  

On Friday evening, a nurse came up to Keith and I in the hallway and said "I've been reading your blog!"  to which Keith smiled in his new "I'm kind of a rock star now" way, and chatted with her. Her name was Roxanne, and she wanted to come by the following day with a couple of her students and change his chest dressings.  Bring it on.  What a great girl and she and two students (one from DeVry and one from Sheridan) took great care with Keith and got his dressings all cleaned up.  The nurses here are awesome.  

Sunday was an exciting day.  Keith said goodbye to his trach tube in the morning.  Dr. Leanne Singer did the honors, and later in the morning Keith's nurse Christine tidied up the trach site and covered it up with a bandage.  This was crucial because it was visiting day!  Keith was pretty excited when lunchtime came around, and we decided to head down to the food court and grab a corned beef sandwich from Druxy's.  HUGE joy on his face as he ate the first "non-hospital" food in weeks.  

Later on Sunday afternoon Keith finally had the opportunity to see his kids who he has not seen for over 4 weeks.  They were overjoyed to see him and have a lovely long chat in the atrium here.  Bobblehead Yoda and Darth Vader were gifts, along with some great handmade Get Well cards.  I know that it was wonderful for Keith to finally see his kids after all of this, and to give them all big hugs. 

They are so appreciative to have their Dad back, appreciative of the incredible gift that he has been given, and that they get to enjoy.  It is times like this that we truly remember the circumstances surrounding this gift.  The thanks extends beyond Keith, and I, it is a whole family and friend network who are thankful each and every moment for the gift that he has received.  

On Monday, Feb 11th, Keith experienced some issues with an elevated heart rate, reduced oxygen and was feeling feverish (although did not have a temperature).  The doctors did an x-ray and EKG and determined that it was possible he had an infection, which they are treating with a broad spectrum antibiotic.  By today he was feeling slightly better, although the pain of the incision site is still strong.  Medications manage this for the most part.  He was out for a 6 minute walk test today, and walked 325 metres.  I'd say he nailed it!


 Lungs for Keith to Breathe
The Facebook page continues to grow, and be a place where we can share the daily goings on for Keith.  While I try to post as often as I can, Keith's rehab is the priority right now and I cannot always post there.

What is amazing, is the number of people who have messaged me privately to ask how Keith is doing, and offer help.  Many of these people are students who have been touched by Keith's story, transplant patients both pre and post who remember how it was for them, and people who are moved by the importance of organ donation.  People who never thought about it before, but having heard Keith's and so many others stories, are moved to make a difference.
As we continue this journey, we will continue to ask everyone a favour - the next person you are talking with, whether it is the teacher at your child's school, your parent or relative, or a stranger you are helping on the street, - please remember that there are thousands of people waiting for organs in your province - your country.  Even a simple conversation about how you have been moved by this story and are trying to raise awareness about the importance of double checking beadonor.ca in Ontario to see if you are registered.  We CAN make a difference and raise the numbers of people registered.  If you tell one person each day, who tells one person, more people will have the conversation and we will continue to spread the word.
YOU CAN SAVE LIVES!

Has it really been just 10 days?

How is this even possible?  Three words.

On January 17th, Keith was brought to TGH, on a ventilator, unable to speak, his body ready to give up.  

Years of deterioration and infection had rendered his lungs completely unable to power his body anymore.  Keith had the will to continue, but his body was not cooperating.  

For 12 days, Keith was in and out of coherent thoughts.  Days went by when he was merely a shell, with a machine that breathed in and out for him, his mind addled by medications and his body fighting to keep him here.  

When I was with him, I was strong.  When I spoke to family and friends, I was strong.  The nurses, media, and strangers couldn't believe how I remained calm, dignified, and even smiled and laughed when I was with him.  How did I do it?

A few weeks before Keith was admitted, an old school friend told me she wanted to give me something.  A talisman.  I admit, I figured I was going to get some smooth rock carving made by an inuit.  I had no idea.  Two days after he was brought in, she brought by my present.  It was a simple silver chain, with three charms on it.  

Faith

Hope

Love

I'm a pretty simple girl when it comes to jewellery.  I've worn the same gold chain for the past 13 years.  I took it off, and put this on.  I touched each talisman and said the words to myself, and then out loud.  This is what would get me through.  

First - Faith.  Faith in God, faith in people, faith in our doctors.  I had to have it, otherwise there was no...

Hope.  Hope that the call would come, that Keith would hold on, that life would continue so that

Love could continue.  My mantra continued throughout each day.  It charged me.  It propelled me to continue to move forward.  Faith. Hope. Love.  

On January 29th, Keith received the gift of life in the form of a pair of gorgeous (I have on good authority) lungs.  A simple decision that was supported by a family.  There was Hope.  My Faith continued to give me strength.  My Love for humanity grew.  

February 7, 2013

Keith is now in a room down on the 7th floor, less supervision, fewer bells and whistles connected to his body.  No oxygen during the day, (possibly at night).  Two chest tubes still in and his bad sense of humour firmly intact.  

Now our hospital days are spent doing more walking, follow up doctor appointments, x-rays, more follow ups with doctors, getting some much needed rest (it's a much quieter floor than the 10th!) and healing.  

Every day is a gift.  Every moment is precious.  And yesterday, Keith finally asked me about some timelines.  He wanted to know why I was saying that he had been in the hospital for three weeks.  I had to tell him that he had been here for 12 days, in and out of consciousness, and that I had been by his side for the entire time.  He looked at me, puzzled, and began to weep.  "How did you stay sane?", he asked.  I pointed at my necklace.  "Faith.  Hope.  Love.  There was no other option for me,  I have you back now.  

Eternal gratitude to the donor.  

Whats going on? January 26/13

ICU  - Day 9

Busy week here.  For some reason (gee, I cannot imagine why) my creative juices just don't seem to be flowing the same way they usually do.  I am trying to work past it to get this information out to everyone as clearly as possible.  

Yesterday, Keith's mouth tube for the ventilator was moved and a tracheostomy was performed to give him some relief from the tube at the top of his throat.  Essentially, now he breathes through the stoma in his neck, and he is still on the ventilator moving between pressure control and support.  The difference between these is that on pressure control, the ventilator is doing all the work of him breathing, when he is able - a good portion of the time - pressure support just gives him a little "boost" to ensure that each breath in and out goes smoothly.  

The upside of this is that I can now see (and this morning, KISS) his beautiful clean shaven face, and his throat can heal so he is a little more comfortable.  He can mouth words to me, and when the incision heals better, (it is a little tight now, due to the area healing) he should be more comfortable.  

After his tracheostomy, the nurse inserted what is known as a PICC line.  Coolest part of this, apart from the fact that it reduces the number of IV points that he has to have on his hands and arms, and doesn't need to be changed for months, the nurse doing the procedure, asked me and my daughter (who had surprised me with a visit home from university) if we wanted to watch the procedure.  VERY COOL.  

Grey's got nothing on these two

So we "suited up" and gave the camera our best double selfie pose and prepared to be amazed.  

Remember when they told us in the early 90's that all these kids playing with video games were going to be doctors and doing surgery with this technology?  They were right.  

I'll probably botch this, and please do not attempt this procedure at home.  

They took an ultrasound of Keiths upper arm and located the veins (NOT arteries, cause they are going the wrong way) The veins are wide open, the arteries pulse.  Very cool to watch.  They carefully marked the area where they needed to insert the initial canula (I think thats what this needle is called).  They measured the length of line they would need to get to the big momma vein. Then they draped Keith's body entirely with a small area exposed where the insertion was going to take place.  

Using the ultrasound as a guide, the canula was inserted, and then the PICC line was cut to size and inserted.  There was a sensor on the end of the line that showed up on a computer screen and it was literally like a video game where she gently pushed the line in, and you saw it moving along where it needed to go on the screen.  A couple of twists and turns and TAA DAA!  It was in place.  

There's a Keith under all that :)

The nurse who was doing the job was amazing, allowing us to watch the process from beginning to end.  Only trick was we werent allowed to faint.  We passed!

After this, Keith was still pretty sedated from his trach, and the snow was coming down like crazy.  I said my goodbyes and we drove home in the crazy snow!  (Friday night)

SATURDAY-

Best part of today - bar none - was coming in this morning and kissing my baby on the lips.    It cannot be described but not being able to kiss him for 9 days, this made my day.  

Tomorrow is another day.  The waiting continues.  The faith, hope and Love continue.