3 years, 25,228,800 Breaths. These are the gifts that Keith has been given.

3 years ago...

I was sitting in a waiting room at Toronto General Hospital, waiting for the word that the surgery was done, and that I could go and see Keith.  

12 days before transplant.  

11 days before transplant

That day was one of the most peaceful days of my life.  I had been in a whirlwind for weeks, living with uncertainty and fear, but doing my best to keep things together - for everyone, but most of all, for Keith.  We were in a no mans land, living each day wondering what the next would bring, not wanting to say what we feared, but knowing that it could happen any time.

His body was done.  His lungs were done.  The doctors were pushing for ECMO and I was saying NO.  His will was strong, he was so determined to keep going, that I wanted him to keep and use his own lungs as long as possible, until his hero came along.

Days before transplant.  His body was shot. 

Dr. Hsin writing "L" and "R" on his chest!
Just to be sure the lungs were in the right spot!

On the evening of January 28th, the call came in.  There might be lungs.

What followed, from about 10 p.m. until 6 a.m. was a quiet evening in the ICU room, with visits from time to time from nurses and doctors saying that they still didn't know if everything was a "go".  At 5 in the morning, everything was confirmed, and Keith was prepped for surgery.

7 1/2 hours later, Keith was out of surgery and by 7:00 that night I was holding his hand.

Seeing him breathe again, knowing what had happened, knowing that he had been gifted with the most precious of gifts ever, filled me with so much emotion that it still brings tears to my eyes as I write this.

 Happy 3rd Lungiversary my darling husband.  Here's to 25,228,800 more breaths, and more after that.  Each one is a blessing.

Thank you, donor.

You too can be a hero.  Visit beadonor.ca and register in Ontario.

Letter from Keith's donor's wife.  (who we
later met, along with the rest of his family)

Healthy, Happy, and loving life!

Written by Sarah Taylor 

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!

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.  

Want to know how you can help? 3-4 easy steps!

How can we help?

FLIPSIDE OF THESE

This is the question that I am asked the most.  What can I do to help?  Here are the answers:

1. THROW AWAY THESE!

 2.  Grab THIS

REMEMBER THESE?  YEP, WE DUTIFULLY SIGNED THEM AND HAD A CONVERSATION WITH OUR FAMILIES.  GOOD ON YOU IF YOU HAVE THEM STASHED IN YOUR WALLET.

NOW THROW THEM OUT.  Really, toss them.  They are useless.

3. FLIP.   See "DONOR' 'DONNEUR'?

If you see Donor / Donneur, you are golden.  You can stop, have a coffee or glass of wine and maybe chocolate.  You are registered! 

DONT SEE DONOR?  SEE NEXT STEP

GO TO beadonor.ca AND REGISTER.  2 MINUTES.  THEN YOU GET YOUR CHOCOLATE.  

At which point you kiss your loved one, have them do the same as above, and you both enjoy your day knowing you can save up to 8 lives and enhance the lives of 75 more through tissue donation!  Wasn't that easy?? 

Please "like", share, and spread the word on Facebook at Lungs for Keith to Breathe   Each "like" helps the internet to LOVE this page, which increases awareness for this incredibly important cause.  Share with the WORLD: because we can!  Share the hashtag #forKeith2breathe on Twitter.  Thank you all from the bottom of our hearts.  

#forKeith2breathe

Venting about venting, note passing, and butt smacking

Was having a lovely sleep this a.m. when the phone rang.  4:00 a.m.  

"Keith was having some trouble breathing, so they have brought him to the Humber Church Memorial Hospital".  Me in my sleepy haze asks "Am I supposed to go there?"  I think the lady on the other end had second thoughts about my suitability as a partner at that point, but the answer was in the affirmative.  

The QEW heading east toward Toronto is pure joy at 4:15 a.m.  Best part of my day - well not quite, but we will get to that.  I flew into the city, found the hospital I had never heard of, and was eventually brought in to see Keith who had been put on a CPAP machine to try to enable him to breathe better, and calm down.  He was quite agitated and confused about where he was at, and unfortunately his C02 levels were elevated (oxygen going in, but not enough C02 going out) and needed to be lowered.  The solution?  - A ventilator to regulate his breathing in and out, and to allow his body to relax and begin to stabilize.  The vent went in at approximately 5:45 a.m. 

Ventilators are pretty intimidating machines.  They breathe for you - end of story.  You trust in the science of them, you trust in the doctors and nurses who are putting it in (who thankfully shoo ME away while doing so) and managing it while it is in.  They make more beeps and blips and whiz bang noises than a 13 year olds cellphone on a Saturday night.  People who have them in, don't like to have them in.  These people must be sedated, in order to allow the machine to do its job, and the person to stabilize.  Various bodily functions are dealt with (imagination folks) and said patient must be kept awake enough in order to allow secretions to be sucked out.  It's a messy, noisy, and delicate business.  

Keith rested most of the day.  I sat.  I didn't talk to him (because they didn't want him agitated as he would be confused about the vent) I didn't hold his hand too much (same reason) I cried some.  I laughed once (great Tweet from a friend) and I listened to the other stories in the room.  I prayed lots, and felt the prayers and intentions of others all day long.  I truly did.  

The goal was to get Keith stabilized, and then off to Toronto General Hospital, where the transplant team who is familiar with him and his case, could be on hand to see him and take care of him, and ultimately remove the ventilator.  At about 3:00 the nurses at Humber advised me that TGH could take Keith at 7:30, and I could go home, get a little rest, and then meet him back downtown.  Good plan.  

Apparently sometime between 3:30 and 7:30 while I was trying to get some rest at home - there was white stuff falling.  Lots of white stuff.  It was quite beautiful to see out in Oakville.  I'd say we had two or three inches of lovely fluffy stuff.  After confirming that Keith was heading to TGH, I left for Toronto.  Not nearly as lovely a drive as the morning fly.  Slow, steady, and the whole time I was thinking about Keith, in an ambulance, with all of his various wires, tubes, and gadgets hooked up, moving across the city in this snow.  I willed the driver of that ambulance to drive super extra carefully. I willed every driver on the road to do the same.  

Arrived TGH around 9:15 and went up to see Keith.  He had just come in about 10 minutes before me, and they were getting him settled in.  I was fully suited up in a gown, gloves and mask, and they brought me in half an hour later to a lovely and extremely quiet, almost zenlike room where he was still on the ventilator, but was more aware of what was going on.  His level of O2 had been reduced significantly, and his saturation levels (just how much oxygen was sticking around and travelling through his body) were a perfect 100%

He couldn't smile at me, but he knew I was there.  And I realized that he wanted to say something to me.  He moved his hand to try to get it out from under the sheets so I helped him - thinking the sweetie wanted to hold my hand.  How touching!  He reached for my gown and started writing letters on me!  It was like something out of a movie, so I told the nurse, and she gave me a clipboard, and paper and pencil.  He wrote me a series of notes / questions.  

Keith wanted to know where he was, why, what had happened, and wanted to convey to me that he was not at all happy about the tube in his throat.  Fair.  I helped him with 3 out of 4.  The nurse came in and explained to him about how the tube was likely going to stay in for the night, but that he was definitely on lower levels of oxygen so that it would make REMOVING the tube something to happen more readily.  While she acknowledged that it was uncomfortable, she advised against increasing sedatives to numb the pain, since it might end up lengthening the time he needed to have it in.  

At this point, I decided that I should try to get some sleep, so I said goodnight to Keith, and removed my gown and gloves and mask and left the room.  He started tapping on the side of the bed.  Like crazy.  I told him that I had removed all my stuff, and would see him in a bit, and he kept tapping.  I told the nurse, and she said she would go in and see what he wanted to write and grabbed the clipboard.  He motioned to her to turn around, and I heard her say, "you want me to turn around?"  Here's where I knew that Keith was feeling just fine.  He wanted to slap my bum.  There.  I said it.  It's what he does - and constantly asks me "what would you do if you didn't have me?  Who would do this?"  I love him.  

I have ensconced myself in a lovely couch in the lounge on the 10th floor.  They will call me if they need me.  I can rest knowing that Keith is being taken care of by the best doctors and nurses for him.  

Over and out.  Will post update very soon.  Thank you again, for all of your support.  Thank you to Steve who brought me chargers for my phone.  Thank you for so many of you who I don't even know, who keep Keith in your prayers and thoughts.  It all means so much to him and I.  Without you, this would be an extremely lonely and frustrating road.  Thank you to the many of you I do know, who continue to support me, and us, with practical and spiritual help.  There aren't words to say how incredibly appreciative we are.  

Night.  

Patience and Grace. #forKeith2breathe

The day to day - Holiday update 2012

#forKeith2breathe

Such excitement about 10 days ago.  It was going to be Christmas a week early!  Sound the trumpets and ring the bells!!  Not so fast.  Patience required.  #forKeith2breathe 

For anyone reading this who is waiting for an organ transplant, you will understand how patience is the single most important trait that you can have during this process.  Without patience, your world will be a rotating door of disappointments.  Understanding that the process is one that is many downs and ups - yes, in that order, will help you get through.  Not to say that there aren't amazing ups along the way, but it is patience that will help you navigate the many emotions and physical trials along the way.  

Hand in hand with patience, I believe need to accept Grace.  We all have our belief systems, some of us more structured than others.  Some of us just "wing it" and believe that the universe will unfold as it will.  Some of us believe in a higher being who has plans laid out for us, and will allow us to know what those plans are when the time is right.  Some believe that the power of positive thinking, that intentional ideas put out to the world will affect change.  Some believe in prayer.  Some believe in massive group worldwide prayer.  

I believe that there is power that can change things.  I believe that we are all loved unconditionally and that while we may not appreciate the way we experience life, that we just may not understand the reasons at this time.  

I know that there are many people out there, people that we know, and many that we don't, that are actively praying, thinking, hoping, visualizing, wishing and putting out to the universe for healthy lungs to become available through the selfless generosity of a donor, for healing for Keith, for wisdom of the medical team.  To all of you, thank you.  Such a simple overused phrase, that cannot begin to convey how appreciative we are for your continued support throughout this process.  

 Please help spread the word.  We are asking for your continued positive thoughts and prayers for Keith.  New Lungs.  Life.  #forKeith2breathe to trend throughout the earth and for me to get my baby home.