Update on Keith's progress.

As many of you know...

Keith received the gift of life on January 29th, 2013.  In a quiet evening and overnight, of reflection and anticipation, the gift was confirmed, and surgery began in the morning of the 29th.  The surgery took 7 1/2 hours.

Three hours post surgery, Keith was extremely pale, fully sedated, and breathing with the aid of a ventilator from his trach tube.  Having the trach, which he had received 3 days before (after a week on the ventilator) was a bonus as it meant that when he did wake up from the surgery, it would be an easier transition off the ventilator because if need be, he could be put back on with no need for intubation (through his mouth).  As I sat beside him for a brief time, and held his hand, and watched him resting, his chest rose and fell, in deep full breaths, and the magnitude of what had transpired hit me.  

Gratitude

There were new, donated, precious lungs in his chest.  They were alive.  Blood was travelling through them, oxygen was being converted to carbon dioxide and was ensuring that his body continued to function.  A team of brilliant, talented and caring surgeons, specialists, doctors, nurses, orderlies, physiotherapists, nutritionists, coordinators, psychologists and countless others - had made it happen.  My husband was right there, beside me, with warm hands and a strong body that I knew, was bound and determined to heal.  

The following day, (lets call it Day 1) Keith was woken up approximately 10:30.  It was my first look at him, in the eye, and when I did look at him, I knew that he knew.  It had happened, and he was still there.  While he wasn't smiling, he was still adjusting to a whole bunch of medication that keeps you pretty messed up for a while.   He had also regained his colour and looked like the man I know!  

Slowly, he began to get his bearings.  His neck was quite stiff from being in one position for so long, so his nurse and I were trying to encourage him to move his head left to right.  I was sitting on one side of the bed and encouraging him to look at me and move his head.  His first note to me at this point (as he still could not speak) was that I was "too short" for him to look down at me.  He's baaaaack!

He was quite tired, understandably, so Day 1 was spent encouraging him to breathe in a new way.  Pre-transplant, Keith's breathing was quick and shallow, as that is all his lungs would allow.  If you have been breathing a certain way for many years, your mind thinks that is how it has to breathe.  We need to teach his mind a new way of breathing.  Deep breath in...HOLD...full breath out - repeat.  I did my best to practice deep breathing with him for a while, however drifting in and out of sleep, combined with the beginnings of some hallucinations, made it a challenge.  He was still on the ventilator when I came in the morning, but was removed from it at 3:30 to allow him to begin to breathe on his own, through the trach tube.  When I left at 6:30, the nurse said he would likely be put back on it overnight to give him a break.  

Day 2 - 

I arrived at the hospital at 9:15 to hear that Keith had not only walked the ENTIRE floor of the ICU, but had been dancing in the aisles with the nurses.  People and doctors were commenting that he was doing exceptionally well for someone 2 days post transplant.  I know that he was just overjoyed to be able to walk, straight and tall, and flirt with nurses.  Did I mention he's back???  :)

I also learned that morning, that he had never been put back on the ventilator!  This was amazing news.     He had been on 32% oxygen overnight (which is 10% more than you and I take in) through the trach mask.  He had been breathing, on his own 24 hours after his operation.  

Day 2 was spent continuing to encourage him to do his breathing practice, lots of deep discussions with him about what a gift he had received, and additional interesting notes from him about the "goings on" in the hospital.  I wont go into detail here about some of the hallucinations that he was experiencing, that will be another blog post.  However, for those reading this who are waiting for transplant, be prepared.  Some pretty crazy stuff happens in your head.  Keith got frustrated at times when I could not understand what he was writing (because a lot of it made absolutely no sense) so I did my best to stay positive and keep him happy.  He rested a lot.  

Plasmapheresis

He also began to fiddle with his NG tube (feeding tube that was in his mouth, going directly to his stomach) and chew on it constantly.  No amount of telling him not to was helping.  He did NOT want it in there.  It was his only source of nutrition so imperative that it stay in until the doctors said it was okay for him to eat on his own.  

Once a day, Keith receives plasmapheresis. See the WIKI on the link under this photo.  Essentially, it is a transfusion to remove his blood, spin it to split the plasma from the blood cells, and reintroduce it with new plasma.  This is done because Keith has a high number of antibodies in his "original" blood.  He had multiple sessions of plasmapheresis during his 7 1/2 hour operation.  The process takes about 1 1/2 hours each time, and he will have it for 5 days post transplant.  

Day 3 - 

Keith had decided that he did not like the NG tube in his mouth, and had removed it overnight.  While it was lovely to be able to come in and kiss him properly, the nurse promptly inserted a new one so that he could get his feeds.  

He was extremely confused this morning.  Again, the hallucination post will be done when I can discuss it with Keith.  I certainly don't want to seem like I am "making fun" of this period of time.  While it can be amusing, the patient truly believes that these things are happening to him.  I had to manage it so that Keith knew that he could trust me, and that I would ensure that he was always safe.  I reassured him that everyone was taking great care of him, loved him, and only had his best interests at heart.  

We took him for a short walk today, but he was extremely tired and did not do any dancing, and had a tough time standing up.  He laid down for a nap mid day, and when he woke, he had removed his NG tube yet again.  The nurse was trying to get someone in to determine that his swallow reflex was strong, and that he could finally eat!  (and have a coffee)

By the middle of the day, he was more lucid, and we had a good discussion about where he was, why he was here, and how well he was doing.  He sipped a little on water and a small medicine cup of coffee!!!  The look in his eyes.  Wish I'd taken a picture of that.  

Day 4 - Eating and Talking!

Food - FINALLY!!!  

After a terrific nights sleep, Keith has had a great day so far.  He has had his trach tube reduced (yesterday) and can talk when he covers it with his finger.  He's a little breathy (think the Godfather, but without the threat of a cow head) but understandable if you are close to him.  

I took a chance and brought him up a Tims coffee this morning.  Worried it might be contraband, I covered it on my way in.  When the nurse gave me the OK, I showed it to Keith.  He was overjoyed.  We figured out that adding coffee to the liquid nutrition drink was the perfect high calorie, nutritionally sound "cappuccino", so we went for it.  

Shortly after his morning "meal" (the first food by mouth in 16 days) he went for a tremendous walk.  He walked the whole floor, waved to people, and smiled at all the ladies.  There are lots of ladies!  

We got back to his room and got him settled in his chair and early afternoon he was brought his first meal.  For someone who used to take 2 hours to eat a meal, he completely surprised me.  He was done in 10 minutes.  Absolutely blown away.  Watching him eat so quickly was absolutely incredible.  He was hungry!  

That brings us up to date.  I'm taking a breather, and he is having a nap.  Our continued blessings and thanks to the donor family.  

Sarah

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

Greetings from ICU!

Everyone has been so wonderful over the past few days since Keith decided to scare the pants off us!

As a quick update, he is still in ICU at Toronto General, is still on the ventilator (but at the lowest possible setting) and is awake and "talking" through notes on paper. He's even been gently warned that some of his humour might not be appreciated by some of the nurses so he needs to tone it down!

We are keeping our fingers crossed that he will be removed from the machine today. Although he is getting used to it, he really wants to be able to breathe on his own again and get up and moving around again.

Please keep visualizing new lungs for Keith. It wont be long #forKeith2breathe. Please share the hashtag and encourage everyone you know to flip over that Ontario Health Card and look for the words "DONOR DONNEUR" on the back. If they are there - great! If not and you wish to be, go to http://www.beadonor.ca and register your wishes. You can and will save up to 8 lives.

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.  

After THE call - Reflections. A long heartfelt post.

So, we've had our first trial run.  Thoughts and Reflections

I'll admit it.  It was pretty emotional to get that call last night.  I had just sat down to dinner (made by my daughter, Emma - bless you) when Keith phoned and said "I got the call".  My first response - "I'll leave now", and then promptly collapsed, crying, into Emma's arms.  

Collapsed?  Am I being too dramatic?  Maybe, but the wave of relief that went through my mind was massive.  Interestingly enough, there was a very loud voice in my head telling me that this was likely a false alarm, not to get my hopes up, and to stay calm.  I can only say that I was relieved to know that we were REALLY on the transplant list.  The phone call confirmed it.  This COULD happen.  

I drove to get Keith from WestPark, and we were at TGH within an hour of the call.  This was at about 8:00 and we mistakenly went to Emergency, and were redirected to Admitting.  (As Keith likes to say, where you admit that you are sick :) )

They directed us up to 7B where we were met by the Nurse on Duty Terri, along with nurses Raaj and Chriselle.  Dr. Kabbani was the transplant fellow on duty who examined Keith, while the nurses took his vitals, asked loads of questions about his day, his health, his emotional state, etc. and the next hour was spent getting bloodwork done, sputum samples, various other samples (!) and getting an IV line into his arm - which took some doing!

The OR had been tentatively booked for 2 a.m. and now we needed to wait while the process to evaluate the donor lungs was carried out.  We would be updated as they knew, and the surgeon would come to speak with us before the surgery should everything go well.

At this point, both Keith and I were pretty quiet.  I was busy keeping up with letting everyone know what was going on, and we were both so incredibly appreciative for all of the love, prayer and support that was flowing into us from all over the globe.  I was updating my Facebook status regularly to keep everyone as informed as I could, all the while being cautious to say that while we had got THE call, we needed to wait to see if the lungs were viable.  False calls are common, and we were very aware of that.    I talked with Keith for a bit about the lungs that he was waiting for.  How the doctors were examining them so carefully to ensure that they would be perfect for him.  How they were scoping them with a camera (which is amazing) and flushing them out to reduce any inflammation, and how they could even heal them if they required some healing.

In the reflective moments over the next few hours, my mind went to the scene somewhere else, where a family had made the decision to support someones wishes and give the gift of life to others.   The process that happens on that other side of the coin is a very delicate one.  If you can even imagine, when it is obvious that someones life will be coming to an end, there are people on hand who are trained to have the difficult discussion with the loved ones.  Time is of the essence, and I cannot even begin to fathom how delicate they need to be.  I want to publicly say to the world, that Keith and I are so grateful for this family, and for other families who have made or will make this incredibly important choice.  It is the ultimate gift, bar none, that you can share.

At midnight, Keith was given two immunosuppression drugs, Cyclosporine and Heparin so that, should the surgery go through, he will already be suppressed and the chance of initial rejection is reduced.  FYI, Cyclosporine actually smells like skunk.  Thankfully, Keith's tastebuds are kind of nonexistent, so he wasn't too bothered.  I got a whiff of those things before he swallowed them.  NASTY.

At 1:00 I went to get a snack and ran into Dr. Kabbani in the hallway.  I said a quick hello, and was going to walk past her, when she said she was coming to talk with Keith.  We were silent as we walked back to the room together, but I knew.  She wasn't the surgeon coming to talk with us.  The potential lungs were not viable for transplant.

Keith was okay.  I was okay.  Expect nothing, and you will never be disappointed.  We were hopeful, but realistic.  It was not to be, but now we knew that Keith was ON the list.  Not that we doubted it, but it is real now.

Update to Thursday morning, December 20th.  With Keith's health issues as concerning as they are, and with WestPark closing for the holidays, Keith is moving to Toronto General Hospital tomorrow morning so that he will be monitored 24/7 with his transplant team in hospital.

This move is the best thing for him, and along with your prayers and love and healing thoughts, we know that he will get the new lungs that he needs, and begin his new life.   Faith, love, hope.  Truly, they all come into play here.  Thank you all so very much for your support.  It means the world to both of us.  We are so blessed, with family, friends, and extended friends (social media!) and the most incredible medical team in the world.



I will keep in touch.

Sarah

The call

Tonight at 6:50 the call came. There are lungs for Keith.

Thank you all for your continued prayers and good thoughts. We are so appreciative of all your love and support.

Should all go well, the surgery will be at 2 am this morning.

Our hearts are full of thanks to the donor family. Please know that you will forever be part of our gratitude moments.

Updates as they come.

Love, Keith and Sarah

How's Keith doing?

Hi everyone!

Over the past couple of weeks I have been so overwhelmed by the help and support that we have been given while we're dealing with this very difficult situation.

In my last blog, I talked about Westpark healthcare Center where Keith will be staying for the next six weeks.
Keith went into Westpark last week on Tuesday, and is settling in very well.

Understandably, a lot of people have been asking me, "how's Keith doing"? And my friend Bob Minas, suggested to me that I get a video of Keith telling everybody how he's doing.

So here it is. 

Please, if you would like to send notes of encouragement to Keith, I know he would really like to hear from everybody. The best way to reach him, would be through Twitter where his handle is @OakvilleHandy.

West Park - (pronounced South Park)

Toronto has a HUGE medical secret  - And Kenny works there.

This is not a word of a lie.  When Keith's respirologist told us about a facility in the west end of Toronto called West Park Healthcare Centre, we immediately both said the words "South Park" in our minds, and, with all due respect to this tremendous facility, that is how we will always think of it.  

When Keith was referred to this hospital back in May, it sounded too good to be true.  I'm not sure how I lived in Toronto most of my adult life, and never heard of this place - although now that I know what its all about, I do know.  I have been lucky, and healthy and had no need!

West Park is a facility that "helps individuals manage difficult health challenges like lung disease, diabetes, stroke, amputation and musculoskeletal issues" through a combination of physiotherapy, nutritional counselling, education and a variety of specialty disciplines.  What they really are, is an amazing opportunity for Keith to improve his level of health before transplant, in an inpatient environment that will teach him methods to continue what he learns at home.  

And there's a guy named Kenny that works in the clinic.  We laughed.  Oh, and this picture on the bathroom door of the clinic.  I knew I liked the place when I saw this.  Humour works for us.  

Universal "I have to pee" symbol

Not only was Keith accepted to the program, he was invited to start next week as an inpatient for 6 weeks to get him into better shape for transplant.  He will come home on the weekends, and I will still see him when we go into doctor appointments at TGH, and rehab at TGH once a week - cause Denise and the gang still want to watch over him closely.  

This program works in cooperation with the transplant program, monitoring all of Keith's vitals, stats, levels and numbers.  (it's all mumbo jumbo to me, I'm probably supposed to understand the FEV1 and O2 sat levels - but truth be told, I don't.  I probably will soon, and should but until then, we trust the docs and physio room workers to know)  They have access to all of Keith's records and paperwork through the network, and Keith will continue to come to all doctor appointments with the rest of the transplant team.  And of course, when the call, THE CALL, comes - we will be on to that next chapter and not really sure how this facility can or will fit into the picture.  It might come the first day he is there...maybe not for 3 months.  

So, thats our big news for the day.  

In other news, many people are asking how Keith is doing.  It's never a simple question to answer, but truthfully, he is hanging in quite well.  It's hard to describe what life is like on a daily basis living while waiting for new lungs.  

When we are not in the car travelling to Toronto, or working out in the treadmill room on the 12th Floor of TGH with all of the awesome team, and so many of our new friends that we have met there, Keith is usually resting, trying to get comfortable either on the couch, or crouched up in bed.  His spirits are actually pretty decent and he is so appreciative of all the help, encouragement, and kind words that everyone has sent through this blog, Facebook and letters.  Thank you all so much, please continue to keep him in your prayers.  

Sarah