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.  

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 Hardcore Heroes of the Transplant Program at TGH

New Kids on the Block - Gangnam Style?

Something to aspire to

So, the drill now is, 3 times a week, Keith has to pump iron.  Technically, very small tiny pieces of iron, but more than he is used to.  He's the new guy in the physio room, still trying to figure out what clique he is going to fit into.  He needs to get his body in the best possible physical shape that it can be, in order to be healthy for his operation that could come any day.  Now, I know he ain't no Ron Burgundy, but he's trying to get there.  (I'm going to need a chest wig for this joke to work).  

And when he does, I'm going to have him dancing Gangnam Style with Hélène Campbell if she will.  Are you up to the challenge, Hélène?

Leg raises, knee tucks, killer treadmill 20 minute walks (with no breaks) and a series of arm motions, stretches and strengthening exercises are going to be a huge part of his life from now on.  The crazy thing, Keith was always super active!  This guy was blading across Toronto and back to Mississauga, cycling wherever and whenever he could (as a teenager, apparently this stopped when he discovered girls...) and playing hockey.  More recently, he was doing mission portages in Algonquin park to ensure the full on back country camping experience with me!

Big Trout Lake - Right in the middle!

 

Exercise has always been a big part of Keith's life, and will continue to be.  

Pretty soon, this (right) and this (below) will meet, and Keith will be back doing what he loves again.  

The wait is on.  Bring it.  

Our new normal - phones at the dinner table a must!

Hands up if you have a "no phones at the table" policy

We do.  We did.  We don't now.  

Will this be the paranoid phase for the next little bit?  Will we be double checking our phones to make sure the ringers are on?  Constantly checking the battery power?  Hearing phantom rings?  

Today we met with our wonderful Transplant coordinator at Toronto General, met with one of the thoracic surgeons and signed all the paperwork and officially had Keith put on the transplant list for a bilateral (double) lung transplant.   We found out that apparently, Keith's current lungs are too big for his body...that one weirded us both out.  

The call could come in a day, a month, a year.  It could come in the middle of rush hour, or 2 in the morning.  It could be a false alarm, it will likely be a false alarm, or very, very real.  

I asked Keith how he feels right now.  First word - relieved.  Second word - um.  Third word reiterates the first.  He is relieved, he is happy that the team sees him as sick as he is.  It's no longer a question of "is he sick enough", but can he stay healthy enough for long enough to get new lungs.  

There will be physio three times a week, regular blood testing, Pulmonary Function Tests, Antibody tests, group information and therapy sessions, and clinic visits with the respirologists, and evening seminars.  Amidst all of this, the phone will ring.  The phone will ring, and it won't matter if the phone is at the dinner table, it won't matter what time it is, or where we are.  It will ring.  

When it does, Keith will be ready.  I will be ready.  His children, friends, and extended family will be ready.  

We are armed...and ready.  Bring it.  

Ask and it shall be given

My first mobile post and its a doozie!

This morning was like any other morning, and at around 10:30 the phone rang. Our lung transplant Coordinator was calling to tell us that Keith was being placed on the transplant list at the highest priority possible.

I firmly believe that the universe was listening. Last night I blogged about the agony of waiting, and this morning the wait was over.

I cannot thank enough all of the people who have continued to support Keith and myself in this journey. There are too many of you to name but suffice it to say that every single one of you has made a profoundly positive difference in our lives.

I took a quick photo of Keith right after he got the news, he is very happy.

At the risk of this reminder sounding ill-timed, I would still like to remind everybody to please make your wishes known with respect to organ donation, go to www.beadonor.ca and make sure that you are registered for organ donation.

Bless you all. The next part of our journey has begun.

Sarah

The Wait - Trout Tickling - 4 Cool things.

“...of all the hardships a person had to face none was more punishing than the simple act of waiting.” 
― Khaled Hosseini, A Thousand Splendid Suns

I realize I have been quiet.  Those who know me, know that this is not really my nature.  Let's just say that my nature has been altered in the past few months.  

We wait.  It's like being in the "waiting place" in Dr. Seuss' Oh the Places You'll Go!  "waiting around for a yes or a no" but not really.  I'm being unnecessarily dramatic because I wanted this post to have punch.  Look at me!  Quotes! Can you believe it??

The past 24 days have been spent waiting to hear from the Transplant team as to their BIG DECISION for Keith's future.  They told us between 3-4 weeks, they meet on Thursdays (! so call on Thursday night - hello!!) and we didn't hear last week so.....  Yeah.  That.  

So for now, not really much to report.  

Keith is going to his physiotherapy twice a week at Credit Valley Hospital.  Apple picking, fish tickling, and treadmill walking.  Yes, I said Fish Tickling.  Ask Keith.  It's actually hilarious.  I'll get a shot of him doing it and that will be the picture.  You really do have to laugh this out, its the only way.  This whole lung transplant thing really gives you new perspective on life, humour, and people.  

Keith - Tickling the Trout.  Google it.  You will thank me.  

And in "can you believe this happened?" news...

I received a note in the mail today from a lady in Victoria B.C. who had read my blog, her husband had seen a tweet about it, and he linked to it in his blog.  Four cool things in one sentence:

• I received a note.  Handwritten.  In an envelope with a stamp even.  Cool.
• People in B.C. are reading the blog and sharing it!  Loving that.  
• Her husband actually linked to my blog in his blog.  (I am not a 'blogger' per se, but I get the sense in the "blogging" world that this is a good thing so I am listing it here as cool.)
• Thats really only three things but hopefully few will notice.  The fourth could be that I managed to insert a link in there.  Nobody reads this far anyway...

Keith's 41st Birthday - Walker anyone? Sexy picture alert... NOT!

In any other blog, this might be a joke - Updated Sept 24th

You know the one, "look at you old man, turning 41, want some Grecian Formula and a cane?"  You know, the bottles of Geritol and subscriptions to CARP?  It's Keith's 41st birthday today, September 23, 2012.  

It's not so funny when it was recommended to Keith last week at his Assessment week at Toronto General Hospital, that he will benefit from a walker.  He is currently unable to walk more than 75 metres in 6 minutes, and after doing THAT, he is completely out of breath.  With a walker, he managed 150.  

A big part of pre-transplant preparation is physio.  It is crucially important that Keith is in the best physical condition that he can possibly be in so that come that amazing day, his body is strong and ready to have the surgery that will save his life.  So, a walker it is.  That and Timbits, but I digress.  

I've combed Kijii and Craigslist.  Crazy thing, I email people on those sites but they don't email back.  I can certainly run out and buy one, but there is actually an assessment process to buy one, and call me crazy, but didn't we do that last week every day, for about 6 hours a day??  

Somebody out there in the Oakville, Burlington or Mississauga area has a decent walker, with 4 wheels and a seat (not the skimpy aluminum ones that just fold, and don't do much else) that they are not using any more.  And of course when I looked for an image of a 41 year old man with oxygen needing a walker, all I found was old man.  I refuse to post that.  

Pretty sexy isnt it?

I went out this morning to get Keith some Timbits (his latest weight gaining trick, 90 calories each, and sour cream his favourite) and had a man walk up to me in the parking lot, as I was coming out.

"Do you know how fattening those are for you?" he said.  "Yes, I do sir, my husband is waiting to be listed for a double lung transplant, and these are helping him to gain the weight that he needs to be strong enough for the operation"    I hated to be so blunt, but lately, I find there is no time for formalities.  

If you know someone in the Oakville area who is no longer using a walker like the one on the left, we are happy to purchase it from them.  I'd love to get one for his birthday today.  

Update - Sept 23 3:00 p.m.  We received a walker from a kind soul, and were so appreciative of shares and tweets to help find one!  Keith got his walker, and now we move on to the next phase.  Waiting to get word of being listed!  

Meeting the "Family"

Sept 17 - 21 is Assessment week

And we are beginning to learn something interesting about this process along the way; that there is a sort of "family" that begins to happen.  Not our words, but those of Hélène Campbell who we met on Monday morning while waiting for some tests.  

I'll be honest, I wrote back in late July about my excitement to meet a fellow Oakville native, Rob Alexander-Carew who had just been through his double lung transplant and I was super excited at the opportunity to learn from him.  When I rolled Keith in to the lab on Monday, Hélène was there and I was, well, starstruck.  

Keith, Sarah, and Hélène

Keith and I were fortunate enough to have about 10 minutes to chat privately with her, about her experience, the amazing job she did of rallying her friends to help raise awareness for organ donation, and the work she continues to do to raise the profile for IPF (Idiopathic Pulmonary Fibrosis).  She and Keith both share a love of Reese's peanut butter cups, and she is an incredible young woman who will continue to do great things for people affected by lung disease in the years to come; of this I am sure.  

In addition to meeting Hélène, we met other recent lung recipients.  I was actually introduced to two people as "they are singles (single lung)" and this was when the concept of the family was explained.  You become a family because you share something that few others can completely relate to.  

Keith and I have spent the last three days going from appointment to appointment in the hospital.  We have had the privilege of meeting many more people in the transplant program, from people waiting on the list, to others being assessed to be listed.  We know their names, we are learning their stories, and the connections are being formed - no matter what happens.  We care what happens to them, and already I find myself thinking about how things will be in 3 months, 6 months, and beyond; for us and for them.  

This truly is about Keith, about his health, about his journey, and about ensuring that he gets the care and treatment that he needs to continue to live a long and healthy life.  Keith is my hero.  He accepts what is with a resolve and strength that I don't know if he realizes he has.  As we continue on this journey, I know for a fact that the heroes are every single person who works in the transplant department of TGH, from the technicians in the lab, to the social workers, to the rehab workers and the surgeons doing this incredible surgery, and of course, the Trillium Gift of Life program that coordinates and makes it all possible.   Thank you.  

I will post an update later this week with specifics of the assessment process.  Until then, thank you for all your good wishes and prayers.