My blog about my husbands need for new lungs. Beautiful lungs received on January 29, 2013. Be an Organ Donor! One Oakville woman's journey as she navigates the transplant system in Toronto, Canada.
So, he proposed. Threw me for a loop, and I accepted wholeheartedly. How could I not. I had waited for this man to come into my life, and I had almost lost him. To know that he wanted our hearts to join in this way, filled me with joy that I cannot describe.
(I considered whether this post was appropriate for this blog, and decided that it was. Keith's story includes me (Sarah) and I shared the story of his proposal here, so will continue on)
A proposal typically includes a ring. In Keith's words "the transplant department had a very poor selection, so I didn't get you one yet". I forgave him. I will say that I am the type of girl that would want to choose my own jewellery anyway, and have Keith be part of the process.
Green has been the colour of Organ Donation for years. It represents new life, and hope, and just happens to look fabulous on redheads (!) I was set on getting an emerald as a centre stone and began looking. The more I researched, the more I realized that an emerald was not the right stone for an engagement ring. It is a softer stone, it scratches and is prone to chipping on an everyday ring. Clearly, I needed to find another stone.
One of my searches led me to discover the Tsavorite. This stone, is a semi-precious deep green garnet, discovered and mined in Kenya and with an incredible story behind it. A sad story but one that speaks of perseverance, history, family and the desire to better the world that we live in. Harder than emerald, and a shade of green that speaks to me. It is clear, deep forest green with a clarity that causes it to sparkle in the sun.
An email to the company connected me with Bruce Bridges, the son of Campbell Bridges who discovered the stone in the early 60's. An email correspondence ensued, where I told him the story about Keith and pointed him to this blog. He was instantly interested in helping, understood my desire for a green stone, and we began the process purchasing the centre stone for my ring.
For years, I had been wearing a ring that my mother gave me, with a lovely centre solitaire diamond and two smaller baguettes on the side. Since finances needed to be considered I asked my mother if she would mind me selling this ring, in order to help me get a new ring. With her blessing, I put that ring up for consignment and began to design my new ring.
There is a little jewelry store in the Bronte Harbour area that has long been a favourite of my mothers. She suggested I go there to have my ring made. With my lovely new tsavorite in tow, and some pictures of what I wanted, I met with the jeweler a few times, and the ring was ordered.
White gold, centre tsavorite with two baguettes on either side. Simple, timeless and clean. The tragic story of Campbell Bridges, the brilliant strong green of Organ Donation, and the clear and pure love that Keith and I share is what makes this ring so special to me, and to us.
As promised, here it is. I love him, I thank his donor, and will wear this symbol of this love and gratitude with pride.
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.
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.
Keith and I have known each other for over 6 years. We met online, dated for a few months, and then circumstances found us in a position to buy a home together MUCH sooner than we expected. We threw caution to the winds, bought a house together, started a business together, worked amazingly well together, and were the best of friends. Inseparable.
Over the years, we settled in to a wonderful sort of sympatico - we got along exceptionally well, rarely fought, but when we did it was with good conversation and communication, and as for things related to his health concerns, I ensured that I was as informed as I could be, so that I would be his closest and most effective advocate, should the need arise.
As you all know, the need arose. And I rose to the challenge. You have all followed Keith and I over the past month as things escalated to the point where I was seriously concerned that my best friend was going to be gone from my life. I never wavered in my efforts to help him, and to help others. There was no other choice for me.
This morning, I donned my only colourful item of clothing (hot pink), and went to the hospital. Keith was not feeling well, had not had a restful night, and was in a lot of pain. My first hour there was spent ensuring that he had hot water bottles for his sore arms and shoulders, and that his pain meds would start to kick in.
I let him rest in bed, and I was working at the computer when he told me that he wanted to reach over and touch me. He had to push his table out of the way, swing his legs over the side of the bed, and I saw him grimace as the movement caused his pain to come back. He walked two steps to where I was, and lowered himself down onto one knee. As he took my hand, I looked at him and he very simply asked "Will you marry me?"
As an aside, throughout this and for the past few years, I have always referred to Keith as my husband. For all intents and purposes, he is. We are common-law, and in the eyes of the government, we are married. Keith and I both came from previous relationships, and certainly for Keith - he had no interest nor need for any sort of formal declaration or paperwork in order to prove how he felt about me. Over the past few years, this has come up, and it was the one thing that he would not budge on. We both agreed that this was the status quo, and that what really mattered - was that we were together and loved each other.
My first reaction was "are you serious?" - romantic huh? But really, this man had told me repeatedly that he would NEVER get married again. He had made friends promise to take him out to the barn if he ever did this again. Thankfully, his two best friends have been informed, and have promised NOT to follow through on their promises. I asked him why he was doing this, and he said it was because he really wanted me to be his wife. He had had a lot of time to think while he has been going through this whole ordeal, and told me that he was so amazed at how I had handled the past few months, and the past month in particular. He has been given a new life, and he wants to spend the rest of his life with me.
I said "yes." I love him.
Somewhere out there, there is a family that I have to thank for this. Thank you so much. I wish that I could find a way to tell you how much this gift means. I hate that it came at such a price for you - it is my daily prayer that you can find peace and know that your loved ones lungs are cherished.
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!
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.
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.
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.
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.
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.
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.
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.
For years, I had been wearing a ring that my mother gave me, with a lovely centre solitaire diamond and two smaller baguettes on the side. Since finances needed to be considered I asked my mother if she would mind me selling this ring, in order to help me get a new ring. With her blessing, I put that ring up for consignment and began to design my new ring.
