Friday, August 17, 2012

I am back

Did you think you would never hear from me again? This blogging business is not easy. Naturally my regular life is a lot less action-packed than a stay in the ICU. My posts are clearly going to be less frequent. In addition, the subject matter will become far more diverse as I search for things to blog about. Bear with me...

Wednesdays are always packed. In my time zone, that was the day before yesterday...In any case, I woke up at 4:51. One would think that is absurdly early and roll back to sleep. In fact, I was almost late! The problem with Wednesdays is that I have to get a blood test, X-Ray and visit the transplant clinic. This seems pretty straightforward until one factors in the time constraints and fasting. I cannot eat past 11 pm the night before the blood work. In addition, I have to take my anti-rejection pills not more than 13 hours before the test. Of course, there is no appointment for the blood work. The clinic is also first come first serve. All of us are like rats in a cage...doors open at 7 am and off to the races. As if this was not complex enough (and you have not already fallen asleep in a confused stupor), Wednesdays are also the day that I take an osteoporosis (I am confident in my manhood) pill. It has a rather unusual regimen in that I must take the pill with a glass full of water and then remain seated straight for 30 minutes...

Getting back to 4:51, I naturally took Mortimer and Lucy for an early morning jaunt (those would be my dogs for the uninitiated, not my children).By the time business was done it was already 5:33. I had to take my pill and scan the net for 30 minutes. Now it is 6:03 and I need to gather the various paraphenalia needed for the clinic, pack a breakfast and perform the morning vitals. Time is really running now as I still need to hop the city bus to get to the hospital. I got on the bus and got to the hospital for 7:12. Not bad!

However, this was just the beginning. By the time I finished at the clinic and returned to my modest bungalow it was already 11:40. Wednesdays are also recycling days. As anyone who knows me will attest, one of my few obsessions is anal retentiveness. I just love dealing with garbage/recycling/composting. Not only do I hoard over the recycling I like to organize it meticulously so it takes as little room as possible.Walking the neighborhood on Wednesdays my blood tends to percolate as boxes are placed willy nilly instead of being crushed properly. What could take 1 bin winds up taking 2 or 3 as well as being sent 3 sheets to the wind...

Getting back to my point, I had to deal with the recycling and other sundries such as lunch for me and my 2 young ones. Once the dust settled, the clock was nearing 2pm. I had to get NJ to a diving class for 3 pm. Let me save that doozy of a story for another day...We arrived and I was wearing pants and a bowling shirt. Note to self: do not wear pants to an indoor swmming complex on an insanely hot day! By the time this wrapped up, and I got home it was 4:30. I had already been up just a dozen hours.

I was ready to attack dinner prep when Virginia returned from work. One look at me and she kindly took control of dinner. Wacky Wednesdays...you gotta love em!
See Ya
Jay

Sunday, July 29, 2012

Hello again, my friends


Nothing like quoting the great Neil Diamond to start a post. It has been awhile. The break in blogging has not really inspired any new material. However, there are still things I have not discussed about my hospital stay so you are in luck.

One of the most discussed events of any hospital stay is the food. Some people love the food but most seem to find hospital repast to be below grade. Let me tell you, I know from below grade. I was extremely fortunate with my surgery. The breathing tube came out very quickly and before I even had a chance to worry about my diet, I was on solid food. Being Jewish, I requested Kosher meals and, to quote a popular Quebec expression, was quickly "accommodated".

Being drowsy and in a postoperative haze, I found the meals pleasing to the palette. As the epidural effect wore off and my taste buds reactivated, I found the meals to be not the best. This was not a surprising development as Virginia is an outstanding balabust (chef) while I enjoy my own simple cooking (think drowning all meats/poultry/marine life in various home made sauces).

My dissatisfaction continued until day 12 in the ICU. It was a Friday night and, appropriately enough, I was given brisket for supper. I do not posses the writing ability to describe meat that is "off", but this brisket was off the charts. It just tasted like a freezer. I could not eat more than 4 bites.Once again, I thought I was being picky.

The next morning my old friend Stephanie came to visit. She asked if I was getting Kosher meals. I replied naturally but expressed mystery as to their origin. Usually these meals come from a caterer who leaves his label on the box should you want to use them for any future party occasions. The only label on my meals was a stamp from an organization called The Jewish Community Council of Canada. Stephanie proceeded to pick up her jaw from the floor. She claimed that the organization had disbanded at least 5 YEARS AGO. Isn't that special?

She had to be joking. She must be confused. I psyched myself up for a tasty Saturday night meal. I opened the package to find a salmon steak. What could go wrong with salmon steak? As it turns out, plenty. You know the greasy black skin at the bottom of the fish? It was at one, completely indivisible from the rest of the salmon. How to describe the texture of the fish? Think of knocking on wood and that should give you an adequate idea of how the salmon felt and sounded.

I was done with the Kosher meals. I had regular hospital food the rest of the way and found it to be absolutely divine.

Saturday, July 28, 2012

Hello again, my friends..

Nothing like quoting the great Neil Diamond to start a post. It has been awhile. The break in blogging has not really inspired any new material. However, there are still things I have not discussed about my hospital stay so you are in luck.

One of the most discussed events of any hospital stay is the food. Some people love the food but most seem to find hospital repast to be below grade. Let me tell you, I know from below grade. I was extremely fortunate with my surgery. The breathing tube came out very quickly and before I even had a chance to worry about my diet, I was on solid food. Being Jewish, I requested Kosher meals and, to quote a popular Quebec expression, was quickly "accommodated".

Being drowsy and in a postoperative haze, I found the meals pleasing to the palette. As the epidural effect wore off and my taste buds reactivated, I found the meals to be not the best. This was not a surprising development as Virginia is an outstanding balabust (chef) while I enjoy my own simple cooking (think drowning all meats/poultry/marine life in various home made sauces).

My dissatisfaction continued until day 12 in the ICU. It was a Friday night and, appropriately enough, I was given brisket for supper. I do not posses the writing ability to describe meat that is "off", but this brisket was off the charts. It just tasted like a freezer. I could not eat more than 4 bites.Once again, I thought I was being picky.

The next morning my old friend Stephanie came to visit. She asked if I was getting Kosher meals. I replied naturally but expressed mystery as to their origin. Usually these meals come from a caterer who leaves his label on the box should you want to use them for any future party occasions. The only label on my meals was a stamp from an organization called The Jewish Community Council of Canada. Stephanie proceeded to pick up her jaw from the floor. She claimed that the organization had disbanded at least 5 YEARS AGO. Isn't that special?

She had to be joking. She must be confused. I psyched myself up for a tasty Saturday night meal. I opened the package to find a salmon steak. What could go wrong with salmon steak? As it turns out, plenty. You know the greasy black skin at the bottom of the fish? It was at one, completely indivisible from the rest of the salmon. How to describe the texture of the fish? Think of knocking on wood and that should give you an adequate idea of how the salmon felt and sounded.

I was done with the Kosher meals. I had regular hospital food the rest of the way and found it to be absolutely divine.

Monday, July 23, 2012

Sleepless Nights

I am not sure what it is about life that leads us to become cranky individuals. I can remember being a wee one (was it the mid-80s?) at my Zaidie's side listening to his 2 main gripes; sleeping and driving. He could not sleep and let me know it. In addition, he also hated driving downtown. His saving grace in his downtown commute was that the parking lot attendant ALWAYS saved him a spot in the lot. Man, he must have gotten some good coin...

Not surprisingly, I entered the sleep deprivation phase some time ago. I worry about the store, the kids, Virginia, the precious pooches, the dust ball situation. I am just slightly neurotic. In addition, my booming cough went on regardless of my waking state. In a foolish fit of optimism, I postulated that post- transplant, with little coughing, I could get a good night's sleep.

Thanks to the genius invention of Willis Carrier, our modest bungalow is equipped with central air. Thus, sleep should come easy despite being in the middle of a heat wave. Some factors have intervened. Sunday called for a trip to Plattsburgh. This is excitement enough for most but considering I have not been out of the country in 2 years, you could add another layer of adrenaline. I took proper precautions by absolutely exhausting myself all day Saturday and taking a sleeping pill. After an hour of limited tossing the sweet gift of sleep was bestowed upon me.

Remember the transplant? One of the pernicious side effects is its impact on the digestive tract. Not to get profane, but I used to be an extremely fast Eliminator. This is no longer the case. So...at 2:13 Sunday morning, I felt the urge. Being the middle of the night, I headed downstairs to do my business...no success. I tossed, turned, worried and before I knew it, it was 3:30. Finally, the situation passed, if you catch my drift. Needless to say, sleep was done like Tiffany.

By the end of yesterday, I was exhausted. I had been up from 2:13 until 10:45. I went to sleep with Mortimer curled right up to me. He is a blanket come to life. He has a light coat and the approximate weight of a good blanket. The blessed joy of sleep arrived in minutes until...

1:47 when my nasal passage was assaulted by an odor so vicious I almost pined for a cup of skunk juice. Lucy's posterior was adjacent to my bed position. It was so overwhelming that I leaped to my feet, grabbed my phone and used the flashlight app to find the inevitable source of the odor. It was my lucky night, no midnight doggy gift, just a permeating waft of Lucy's gaseous stomach.

Sleep arrived but was defeated by another canine foible. As I mentioned, our modest bungalow does have central air but the master bathroom does not. For some unknown reason, Mortimer felt compelled to sleep the latter half of the night in the middle of the bathroom floor. My depth of sleep being no deeper than a single ply of generic tissue, the rush of hot air startled me. In addition, the bedroom was flooded by the dawn light in the bathroom. No matter, it was already 4:58.

Wednesday, July 18, 2012

The Perks of a Double Lung Transplant

It delights me to say that I have really enjoyed my lung transplant experience. Sure there were a couple of bumps along the way like a pneumonia, and the night I had a really crazy psychotic trip Sure I lost all semblance of dignity for a brief period of 13.5 days when I could neither wash myself, nor deal with any evacuated material. But this is a tiny price to pay for a new lease on life. The really incredible part of my recovery has been my brush with fame.

It all started with Frank Deford. You know the guy who wrote for Sports Illustrated forever, who started The National (the first national sports newspaper), the man who lost his daughter Alex at the age of 8 to Cystic Fibrosis. This is a man of substance, dignity and so you are probably wondering what does he have to do with me? Well, my good friend Melissa notified Frank about my condition and even though I am pretty sure he has a full schedule and I am a total stranger, he still found the time to send me a get well email. Not only was I flabbergasted, but I immediately wrote a warm response never expecting to hear from Frank again. Wrong! He replied to my thank you email within 3 minutes. That was A) amazing and B) slightly clingy so I ceased further communication.

The next celebrity that I shared a word or 2 with was Bob Costas. Yes, THAT Bob Costas! However, the hour is late, the details many and bedtime draws near so that will be for another post.

Upon my discharge, I thought my brush with fame was over. In fact, it was just starting...I came home from the hospital to receive a personalized letter from no less an esteemed figure than the Right Honourable Stephen Harper. Yes folks, the current Prime Minister of Canada found time, in what must be a busy day, to drop me a dozen lines wishing me a speedy recovery, congratulations and that I remain in their thoughts.Apparently my friend Dr. J. informed the Prime Minister about my condition. This just about made me cry. I am not bashful in the least. Stephen Harper will go down as one of the PMs in Canadian history. He is a hero of mine in that he says what he believes and does it. People complain that politicians are spineless and govern by polls. That is what makes Stephen Harper so refreshing. I will need to get that framed.

Who could be left after Deford, Costats and Harper? That is a pretty impressive trio...Well, watch out Liberal readers, members of the far left and anybody else....because I got a letter from George W. Bush. Yes, the man who preceded Obama found time in his retirement to write to me. People who know me, or know of me know how much I liked George Bush. In fact, my fondness for W. once resulted in a mildly uncomfortable New Year's Eve party. We were a group of 12 at a fancy dan joint called Biche Aux Bois. You have to dress to the nines and they have got all the cutlery laid out just to give you a hint of the atmosphere. When can an entire New Year's Eve party go by without talking politics? Naturally, the subject of Iraq came up and one thing led to another, someone impugned George Bush's integrity beyond my tolerance level and I called my good friend Sascha a fu..king idiot at a pretty audible level. Things between us are better now...That tells you how much I like W. Again it blows my mind that people of this caliber found time to write to me. This is just some of the inspiration that continues to fuel my recovery.

Tuesday, July 17, 2012

Adventures in Glycemia

I am definitely old school. I love my AM radio band, I gladly wear socks and sneakers and I have little, if any, idea on how to text messages. Naturally, I bring a John Wayne type attitude towards pain i.e. it does not exist. There are very few things that get to me at a visceral level. I have just a couple of exceptions.

Cheese cuts to the heart of the matter. It is all a matter of taste but just about every type of cheese makes me want to hurl. In fact, many cheeses are off-limits to lung transplant survivors. My condolences to those individuals. About the only cheese I adore are Kraft/Migdal orange slices, particularly those slices wrapped in plastic. Those seal in the fresh taste as well as the 5 cups of milk in each slice.

Needles petrify me. It probably is an odd thing for me to say considering I have had 100s of needles recently not to mention rolling up my chest like the blinds in my room. I do not shout, squirm or spasm in a frantic way when I get a shot. I just need to look away. This coping mechanism has worked delightfully until now...

You see, now that I am on such fantastic anti-rejection drugs like Prednisone, Prograff, and Cellcept (don't they sound delicious?) there will be a profound effect on my sugar levels. I eat no candy, no pastry or anything else sweet. The sweetest things I eat are Sun-Maid raisins (always look for the lady wearing a bonnet for your freshest raisin supply) and Rougemont apple juice. There is not much to cut out of my diet.

Upon being discharged, I was given the most basic lesson in taking my sugar level. The basic problem is that I need to load the needle and then watch myself give me a needle. This is highly agitating. Sometimes the prick is too small and I have to start all over again. Thus far, I have needed to take my sugar level 6 times but have had about 12 other useless pricks. The success rate has got to improve. Incidentally, anxiety, neuroses and frustration over blood sugar reading is not the best marital aid just in case you were wondering....

Sunday, July 15, 2012

Tale of the Tape

The reality of being out of the hospital and returning to my modest bungalow has hit me full on. My daily to do list is lengthy. As soon as I wake up, I need to take my weight, blood pressure, pulse and temperature. Stepping on the scale was the first thing that hit me upside the head. When I entered the hospital I was in my full flyweight 123 pound form. Today, I weigh 110 pounds. That's right, I lost 10% of my body weight in 19 days. Anyone looking for a weight loss program?

Once the vital signs are done, I need to do a breathing test with some new fancy Dan device. It is on order and there is just enough room left in my bedside desk for it. The box is chock full of plugs, machines, guides and notebooks. It is lucky Virginia converted some vintage office furniture into convenient jumbo-sized nightstands. What a gem!

Once this brief routine is completed and I am fully recovered, it will be time to walk the dogs and have a hearty breakfast. I must eat quickly as I need 2 hours before I can take my anti-rejection pills at 8 am. If you are thinking backwards, that means I need to be finished my medical routine, walking the dogs and breakfast by 8. The days of getting up at 5am continue....terrific!

During the day I need to get my rehabilitation program done, do some exercise and observe my pill schedule religiously. Once I get this stuff done,then I just need to do everything else that life requires.

Each day will pretty much go like this except for clinic day or blood test day when a monkey wrench gums up my schedule as I cannot take any medicine or have any food until I get my blood work done. This only happens about once every 4.5 days at the beginning so it is not like it is complicated...

Saturday, July 14, 2012

Good morning from Home

As the last entry indicated, the blog is entering a new phase. No longer will I be coming to you from my palatial suite at Notre Dame Hospital. Rather, I have now shifted to my more modest residential bungalow. What this has to do with the blog remains unclear. Obviously, the blog will change as without my characters like Blood Test Lady and the various doctors, I will have to scrounge a bit deeper for material...

Well, I must say, the first morning home has been fantastic. The whole family walked the dogs together. That is to say, Virginia walked the dogs, and we accompanied her. It took us about 15 minutes and I did not cough or lose my breath at any moment. Let's give the transplant team 2 points. Upon returning, NJ actually made and served me scrambled eggs. Awesome! Not to deride the hospital, but I actually had cold milk with my cereal. Yoohoo!

In case you are wondering, upon returning home, the dogs gave me a royal welcome. The kids had no idea I was coming home so when they returned from camp it is fair to say they were go smacked. I was given a hearty round of hugs and kisses. People came to visit and a wonderful Shabbat meal was had by all.

It is great to be back!
Sent from my iPad

Thursday, July 12, 2012

Picnic

What a treat to cap off a long day...Virginia and the kids came to the hospital for a picnic! It was a bit of a stressful day as I had many meetings with, you guessed it, many doctors. In addition, I had my first blood transfusion. It is a painfully slow process - like 6 hours long slow. I just kept thinking ahead to the picnic.

Sure enough, at 6:12 my phone rang. Virginia and the kids were on the way. I immediately rushed to the elevators. I waited at the main elevator for at least 10 minutes with no success. Having been on the hospital for 5, no make that 18 days, I know all the shortcuts. I went to the ancient service elevators but after 5 minutes I lost my patience and chastened myself for leaving my original plan. Surely that elevator came. Nope, the lady I was waiting with was still there. I am starting to panic as I cannot walk down 8 flights of stairs. I head across the ward and finally success!

I now head towards the front door. It seems like a glorious evening. I have not been outside for a single second since my arrival. The kids intercepted me, hugged me and we went outside together. Ah, for the sweet love of liberty, it is simply gorgio outside. What a marvelous evening to take in the fresh air.

The food could have been rancid and I would not have cared (it was excellent). Just the chance to eat together as a family outside was an absolute delight. We had some sparkling dinner conversation. At one point I asked NJ if I ever complained and she replied very rarely. Is this kid not even 7? We ate, chatted and watched the sun kind of set over Lafontaine Park ( a fine spot for locals and tourists alike).

Then, it was time to go. Another round of hugs and kisses and off to the Snodmobile. It was just the fill-up I needed to continue my journey...

A Quick One

I have been keeping it classy lately so be warned...

I got up at about 4:35 this morning. I felt as though I needed to visit the bathroom...ASAP. I was still connected to my cumbersome IV pole so I rung for the nurse. An orderly passed by and I explained why I needed a nurse. I believe he mistook my French for Swahili as minutes continued to pass with no heed to my call. Knowing my digestive system I know, as the late Ted Tevan would say, that I was running out of racetrack. I got up, unplugged my IV from the socket, schlepped it across the room all the while avoiding any nasty wire entanglement. I also needed to carry my pee pitcher (is that the proper medical term?) as the doctors monitor just about everything.

I make it to the bathroom. However, I have waited just a bit too long. In the name of politesse, let's just say both ends needed to be emptied simultaneously. Not usually a problem, unless you have up into a pee pitcher. I am a somewhat talented individual so the difficult was achieved with no mess.

All of a sudden it hit me. The theme from Chariots of Fire was at high volume in my mind. I could feel Blood Test Lady's imminent arrival. In my mind, I can feel the ward door opening. No, it is not in my mind, I can definitely here the trolley...sure enough I was still not done when she entered the room. I apologized and asked for 3 more minutes.

Upon her return to my room she told me I wake up quite early.

Wednesday, July 11, 2012

Staples

I am sure no reader would be surprised to know that I have been walking around with a bunch of staples across my chest. Those staples are keeping the nasty gash left by the clamp shell method closed (nothing like throwing in some free medical terminology). Today was the day to remove half the staples.

The nurses asked if I wanted to take anything. Being a disciple of Mr. T and Hulk Hogan, amongst others, I naturally scoffed at the idea. Virginia, being the rational sort, suggested I take something. Meagerly, I gave in. The nurse returned with 2 pills and said she would return in 20 minutes.

The nurse returned in due time and proceeded to remove half the staples. I felt a little woozy but luckily a tasty lunch of boeuf bourgignon with potatoes, beans and soup was served to me. At the conclusion of the meal I said to Virginia that this hospital really knew its stuff as the effect of the sedative had vanished.

It was at this moment that Virginia nearly peed in her pants. She explained to me I was given tylenol for the procedure. I pity the fool!

Tuesday, July 10, 2012

The Daily Grind

Many might think that a prolonged hospital stay is about as much fun as stepping on a rusty nail that may require a tetanus shot. Having been hospitalized for 9.5 days, I can assure you the truth is a whole lot rosier.

The days definitely start on the early side. A kindly, totally non-descript middle aged lady trundles her blood test trolley into my room daily at roughly 4:50 am. What a job! Don't even contemplate going back to sleep as the overnight night nurse comes in at about 5:15 to take the last set of vital signs.

The activity kind of peters out at this point so this gave me time to get out of my Google Reader deficit. You see, while I was recovering, my unread google reader items went as high as 5500. Glad to report my deficit is down to 743.

Gustatorially speaking, the high point arrives with the serving of breakfast. As Virginia will attest, there is nothing quite like hospital toast. Add some eggs and delicious cereal and you've got heaven on a plate.

Not a day passes without a chest x-ray. This sounds easy enough but it is tricky. One needs to be transported to the radiology department. I am wheeled into the designated parking area for transport. I then wait for an orderly to take me to radiology. This takes heaps of time as molasses travels light years faster than the dinosaur era elevators at the hospital. Once I get to radiology I am placed in a cue of patients waiting for their respective x-rays. This looks just like a taxi stand. Once the x-ray is done, rinse and repeat.

As one might imagine, the day is peppered by various health professionals popping in. In my case this runs the gamut from immunologists, surgeon, thoracic personnel, physiotherapists and personal masseuse.

I go for frequent walks, do breathing exercises, engage in lively discussions with any and all visitors and obsess about blog posting. The day gets around to 9 pm faster than 2 shakes of a dog's tail. I have wind things down as Blood Test Lady' s arrival is around the corner.

Sunday, July 8, 2012

on kids and transplants

This is officially Jay's blog, so I am really holding back from posting. But seeing as 8 years after the old adoption blog I STILL get hits in the middle of the night on parents who google China+adoption+*insertyourownweirdquestion*, I figure someone, somewhere, is going to google kids and transplants. So this is what I have to say about an almost 7 y.o. and 9.5 y.o. dealing with a double lung transplant:
  • they always knew it was coming. at first we only used words like <fix daddy's lungs> or lung medicine, but in the last 6 months, we have been very matter of fact about transplant: Daddy will get new lungs from a person that will pass away and give their organs to help other people.
  • Our kids happen to be adopted so we have always been quite connected with therapists and other professionals. we got a lot of help in the last 2 years to prepare for dealing with this.
  • Still, a not-quite-7-y.o. will have a hard time, at some point. it's ok. that is what I have been telling her over and over: it's ok. it's scary and happy and sad all rolled into one. But in the end, it's happy, very very happy. so feel what you have to feel but remember, Daddy is coming home.
  • Our so-very-anxious 9 y.o. dealt with it better than we could have EVER anticipated. A) she was not here, thank g-d for sleep-away camp! (something I NEVER thought I would say!), but B), she knew from the second she saw me that her Daddy would never miss picking her up and if he wasn't there, it was because he got his transplant. Makes all that work we have done on attachment building finally show. a second miracle.
  • even if the books say there are no visits, nurses are human, and if you ask nicely and it's not a danger to the patient, they will let the kids see their parent, so ask nicely.
  • Encourage your kids to talk about it with their friends. It just happens that about a month ago, SQ and her friends were at a big event and I found myself explaining the ins and outs of lung transplants with 3 9 y.o. girls. It was a truly weird conversation to have (in a public bathroom no less) but it made our girls feel like they weren't keeping a secret. And SQ's friends have written to Jay because they understand what is happening to him.
Remember that the transplant is not only happening to the patient. It's happening to everyone in the family. We happen to be VERT fortunate to own our business and make our schedule and have fabulous staff that is pulling together to let me spend all the time I need with both Jay and the girls. I simply cannot imagine what my day would be like if I had to go to work right now. And the girls... they are doing SO SO well, but it's very hard on them. They are worried and excited at the same time. SQ said it best: the waiting is over, we can do whatever we want now..... Not quite yet, but soon enough!

Free!

No drains, no walker!

Daddy!

It felt great

I am not even going there. It was two weeks ago today that our family was heading to the legendary Cote-St-Luc Shopping Center. We were dropping our precious SQ off to get picked up by the Camp Wilwaken Bus. Like countless parents sending their kids to sleep away camp for the first time, we all had a bad case of butterflies. Would SQ have a good time? Would SQ eat? Would SQ make friends? After a short time of hugs and kisses SQ boarded the bus and her great adventure began.

The call for the transplant came 3 hours later...

I love Virginia. I am glad I married Virginia. Every family needs a worrier and, more particularly, a planner. I worry some and plan less. My great philosophy is to address any worry with let's cross that bridge when we get to it. Virginia, on the other hand, anticipates.

Within a day or two we got an email from SQ with a nice picture and note that camp was good. After that, nada, zero, stone cold silence. Somehow, despite dealing with the early days of the transplant and NJ, Virginia found some other outlet of energy to get the camp to update us about SQ. The result of her emails, calls and back door lines of communication resulted in 1 cryptic email from SQ that had a picture drawn by her but a note scrawled by someone else.

Well, now that Virginia could not worry about the time SQ was having, a good amount of energy was devoted to dealing with my absence. You see, kids get taken home by their parents. It would be kind of obvious that I would not be making the trip. Virginia consulted with trusted members of her brain trust, friends and me. I am not even going to provide any details because....

The second SQ saw Virginia without me at pickup day she immediately said Daddy must have had his big operation. He would never miss picking me up.

It felt great.

Sent from my iPad

Saturday, July 7, 2012

Things you need to know

Michael Libman, a great and good friend of mine, purchased me 3 lottery tickets. Apparently 1 winning ticket of 50 million was drawn from Quebec. In addition, 7 quebecers have also won a million dollars each. The tickets are who knows where but I feel as though I am already blessed.

At about 6:12 this morning I felt some kind of weird sensation. After a protracted, often uncomfortable 59 hour labor period, mother nature finally called. The proud father claims to have immediately shed about 8 pounds of body weight. I can only say that it only rarely one feels such an utter state of bliss and contentment.

As many of you may know, I left the ICU last night. The level of care extended to me was nothing short of Herculean. As a result, when the orderly offered to sit me in my lounger this morning, I had no qualms. I remembered my chair from the ICU. It was well-appointed with a blanket, a cushion, a pillow etc. Fast forward to two hours after sitting in the chair this morning was when it struck me that I placed nothing between my buttocks and the beautiful blue vinyl chair...the dislodging is somewhat unpleasant.

In other good news,my catheter was removed. The nurse approached me with a syringe. I naturally made a sound but she assured me it was because I was engorged/swollen/ballooned that she needed to do this. Sure enough I started to feel something. Then I felt a lot of pressure. Have you ever feared/wanted the same thing to happen simultaneously? I realized where this increasing pressure was leading to. Then she said "grand respiration" and what seemed like a 1 minute ordeal was over in 45 seconds.

Clearly the day is going well. Now all I have to do is pee. Time passed and then the nurse told me I needed to pee within 90 minutes. Who is good under pressure?

As I mentioned I am now in a normal ward so the manpower is not the same. At about 3:50 I felt not a tinkle but, unbelievably, a second call to nature. I ring my bell. 10 minutes pass and I am really rocking back and forth. Finally, help arrives. I must do my business but I also need to hold a pitcher simultaneously as I have been warned to keep the first pee. Incredibly nature called and I passed enough urine to satisfy the catheter authorities.

You see how I already feel so lucky.
Sent from my iPad

MOVED!

Things seem to happen when I am NOT at the hospital.... maybe I should stay home or go back to work! (Jay would love for me to go back to work!!!)
Anyhow, this is to tell you that if you are going to see Jay, you now really need to get on the elevator, because he FINALLY moved to the ward last night. 
he is on the 8th floor, I believe he said room 80001.

I'm off to pick up SQ from camp!

Friday, July 6, 2012

The latest

You know how people say you shouldn't believe everything you hear? Well, the combination of a bronchoscopy, an epidural removal and a pick line insertion is not the trifecta you are looking to experience.

While it as cool to see my lungs and experience a bronchial lavage, let's just say I can wait 3 weeks for the next one.

Between the sedative for the bronchoscopy and for the pick line, let's just say I had wee bit of a reaction. I slightly remember telling ines about how lovely Europe is and I spent most of the night battling off dastardly enemy operatives. Though disturbing, no one's life is really complete without having one hell of a hallucinatory experience.

Things are mundane today as I try to enjoy the food, walk and try to have a few loogies. Many of you readers seem to cling to the basest of the human experience.for you I will tell you we ate coming up on 48 hours since my last movement. G-d help me.

Broth-less soup

Thursday, July 5, 2012

Update in bullet points

Judging by the number of emails, texts and Facebook messages I received today, you are all waiting for a witty update from Jay. Instead, you get bullet points from me:

- Jay was in great spirits this morning but was being kept fasting. He told me they kept bringing him breakfast and the nurse kept taking it away!
- he had his broncoscopy. It was not fun, are you surprised? But it went well and they didn't find anything wrong/bad/unusual
-it made him groggy for the rest if the day, though he dis devour the veal they brought for lunch
- at 230 they came to get him to put in a picc line so they can remove the neck iv.
-thus was my cue to leave has N.J. and I had plans
- when I left he still had a catheter...

Wednesday, July 4, 2012

Excitement

It looks like there is lots of excitement in store for me over the next 24 hours. First of all, I am anxiously awaiting my first bronchoscopy! I hear it is a can't miss good time. I have been having a bit of a problem clearing my lungs so I am sure I will feel better once it is completed. I will be sure to relay all the highlights post haste.

I am pretty sue they are also taking out my catheter as well. This is nothing less than fantastic news. I vaguely remember insertion as being mildly uncomfortable. Apparently there are different levels of catheters and I have a particularly sensitive one. I feel like I pee about every two and a half minutes. This has been a learning experience for me as seldom visit a bathroom for any reason between 7 am and 7 pm. It will be good to get back to normal.

Believe it or not, there is another procedure being done tomorrow but I have already forgotten it. There is a small concern that water could be accumulating in my lungs, so the doctors feel once I am getting the other stuff done, why not throw on another procedure? I love medical pragmatism!

I could probably drag on this post but I have actually gotten my blood pressure a little high with all of the anticipation so tune in for a full run down on how things work out.

Sent from my iPad

Tuesday, July 3, 2012

Thanks!

I always believed that I have had the easies role to play in our little medical drama. All I have to do is mostly sit on my behind and follow doctors' orders and things fall into place. People like my dear wife Virginia have to deal with reality. Getting kids to camp, picking up from camp, etc we all know the daily frustrations of life. Clearly I deal with none of these from my comfy bed! So to Virginia, my deepest gratitude for letting me focus on my own stuff.

While everyone likes to believe that Virginia is Wonder Woman, she cannot do it herself. I have come to know and love the likes of the Budman-Fish tandem, the Libmans (especially their kids affinity for our dogs!) and the fabulous duo Cliff-any! I must also mention NJ's special emergency Shabbat family, you know who you are! Each of you has played an essential role in dealing with this extremely difficult situation.

To say nothing of my family, at the moment we are quite geographically dispersed but every one has made the lovely journey to the fourth floor ICU. Your emails keep me going when you are not here.

Having a double lung transplant is a wonderful way to revive a once vibrant social network! It's been tremendous catching up with Mark, Jason times two, Marc, Gideon, Ines and Karen.

If I have somehow forgotten you, blame it on the drugs, or Virginia!

Sent from my iPad

Morning cocktail

Nitty gritty

Being a blog about the transplant process things can get nasty. After two and a half days of shaking rattling and rolling a great event happened at 8:23 am...I had a loogie! So many things to observe. First of all, this was not strictly my "brand" but a combination of my donor and I. I will not bore you with the details, but elements such size, texture, color and thickness were duly noted. I feel the excitement is building.

Sent from my iPad

Visitors - updated

so far today (tuesday) the morning is very busy, jay's sisters are both visiting from out of town. in the afternoon it's just me, so pop in to say hi!
As far as I know no one is coming at 4 so if you are, let us know.
I know a surprise visitor(s) is coming later after work.....

Wednesday Dr. Jason will come afternoon-evening, time to be determined.
Ines will return Thursday.
both of those days can easily be split by others in the 4 to 8 pm slot so if you have time, just comment and come.

Friday is kind of a special day... I might want to go out to dinner, if anyone is free (big hint). but only if someone else can come hang out with jay, because I know I would not be able to enjoy one second of my bday dinner knowing he was alone eating hospital food.

Still looking for volunteers for SATURDAY all day! (melissa, I know you are coming! I am just hoping to not make you sit there all day!!). StephS. coming 9 to 11, anyone else? NJ and I will be picking up SQ at camp.

PS: jay really likes to have the ipad, so I didn't take it at 4 yesterday, I left it and had Dina bring it to my house. I think I would like to do that everyday. If you plan on coming after work, can you please comment (you can leave initials, I can usually figure it out) or text me. That way I'll know the iPad will make it home. Otherwise, after I put NJ to bed I will drive back to get it, because if he is alone at dinner time, at least he can write us updates!!!

Monday, July 2, 2012

Daily line

Well I guess this is becoming quite mundane...here are some facts about my daily ritual.

The medical situation is fluid...things change from one hour to the next, let alone day to day. It looks like I will have about 50 pills today. I like pills. The problem is that some stuff is not pill able. As a result, I am also drinking various fizz mixtures, syrups and something that can best be described as rancid soy sauce.

I was able to walk today as well as enjoy my lounger but a sudden drop in blood pressure knocked me out for a bit. I have obviously recovered.

It was great to have Virginia, cliff, Amy, and, of course, Dina spend time today. I have adventures coming up with the likes of bob Costas, frank deford among others. It should be exciting times.

Sent from my iPad

Lungs of steel by Ez.

Sunday, July 1, 2012

a word from V

What's the protocol? Am I still allowed to blog, or is this officially the Jay-Show? I haven't had my password revoked, so I assume I am still allowed. Also, I bring him the iPad and take it away, so he should be nice to me....

Wanted to tell everyone how much the notes, but especially the visits, mean to Jay. I must be a boring visitor because the day nurse commented on how much he enjoyed the 3 guys who started his day... I hear the political discussions got pretty heated and were broken up when his mother and sister showed up. Guess his mom can still make him sit and listen, good thing!

On the home front, NJ had a fabulous day. We started off by doing nothing. One laptop, one new ipod, 1 hour of nothingness in bed together. Then we packed up most of the craft room to prepare it for our student's arrival. NJ is a master organiser and was the perfect person for the job. After making her daily video for daddy, she spent the rest of the day swimming and then biking to a sushi restaurant. She is not even back yet, it's almost 8 pm, guess they are having a good time!

Thank you again to everyone who is supporting us through this. I won't lie, it gets hard at some points to juggle it all. But watching Jay progress so quickly and with such gusto, it makes the rest seem all silly.

1 week anniversary

Well it has been just about 1 week since the transplant and numerous readers have been hankering for a report. Actually none have but entertain me...

The staff here has been kind, attentive and personable. I think the best way to capture the experience is to say the transplant experience kicks the French summer immersion program at jonquiere by far.

99.9 per cent of the staff speak French. They are chatty and helpful. I was raised learning French at Talmud Torah/herzliah. I can honestly say that teachers like Roch Turbide, Madame Blackburn and Monsieur lefebvre would find I could give plywood a good race in carrying on a coherent, grammatically correct French conversation. after a week of immersion in the French milieu my former teachers would be delighted with my progress.

The staff is helpful in every way imaginable. From the mundane of dealing with fecal matter to nipping a pneumonia in the bud, everything is done quickly, effectively and with dignity.

I have made friends with the orderlies. It was probably postop euphoria but I shot off my mouth with pronouncements that the Azzuri would make it to the finals. Most replied with polite stares as you might regard a loud aging slightly crazy uncle. In the end the Azzuri did get to the finals and people think I am only slightly less crazy.

So, in summary, the transplant program is a great cultural, educational opportunity and I am already coming out a better person for it.

Now, keep your lungs tidy and sign your donor card.

Sent from my iPad

A wonderful Summer Saturday

Last you heard from me I was debasing the blogging profession with my "liberation". Well, this transplant business is serious and I came down with pneumonia. Luckily doctors are plentiful and we nipped the problem in the bud. It's the little things that make everyday special.
Yesterday, started with my usual bathing procedure was complimented by a wonderful facial shave Mario, it felt good. Things continued to improve as virginia and amy fish came by with an early morning visit. Eager to make up for lost time, I was placed in my lounger by 9 am. After a brief 5 hour visit Virginia got the rest of the day off, and replaced by excellent visitors, mummy and Jody kept the banter lights while I enjoyed a lunch of dore sole (Marvelous). They were ably replaced by my old friend Eve despite heading in days and battles with the Israeli bureaucracy, she found a couple of hours to spend with me. We took a fine tour of nostalgiaville. Discussing the old snowden neighborhood and her dad's retail adventures in Verdun.
Finally, Mark Winkler, a true renaissance man of conversation, filled out the day. What did we not talk about? Wife's, lovers and other strangers (oh I am confusing myself with the old CFQR radio show) we talked family, the middle east, and memories of growers, apple cider, Rick satenstein and wild capital day celebrations in our nations capital that are already more than 15 years past. Live really rushes by.
Ten hours had pasted since being placed in my lounger, so I felt it was time to get back to bed. But life had one more sweat surprise, I was nearing 40 hours since my last bathroom rendezvous, I rung for assistance and Michel assisted me to the toilet and casually motioned towards a cord I should pull when done, and he would finish the job, what class! Being in a rush I failed to notice the correct wire, I can now say with certainty there are a crap load of wires emanating from my body, each of which was pulled without success. Mildly panicked I began tapping on my room door, but the provided privacy curtain dulled my knocking. I now lifted the curtains and began banging rather incessantly on the window, however the ICU is a large place... I finally decided to peel the privacy curtains right back and engage in a mixture of dancing and shouting. Fortunately a nurse came to my rescue prior to sending me to the psych ward. The important thing is you learn a new thing everyday, the bright red cord right beside the toilet labeled "emergency" is the one you pull.
So even though I move no more than 20 feet the entire day, life's little adventures really make for a swell afternoon.
It is at this time that I ask you to keep your lungs tidy and sigh your donor card.


Sent from my iPad

Scheduling ahead

Its early on Sunday morning and I cannot give you a jay update because I haven't spoken to him since yesterday. I am sure we will hear from him as soon as Micheal hands him his iPad.

I would like to plan ahead for this week as things are bit more complicated: NJ and I are alone. So i will drop her off at camp early and be by hospital a little before 9. So if anyone is an early riser and wants to pop in on jay at 7 anyday this week, put it in the comments.

I will stay from 9 to 330.  I enjoy spending time with my husband, so feel free to drop in if it fits your schedule, but no long visits during those hours. (Obviously this does not apply to out of towners, I am happy to share him with people who come in. But if you live here and could pick another time, that would be helpful)

I will leave by 330 to pick up NJ from camp. Many of you have asked to have her for dinner or play dates. Thank you. But as though as she is beeing,  she does need her mom. So this week she is hanging with Megann on Wednesday and my dad will come for dinner either Tue or Thur. Lets leave it at that for now, but if I need it, I know lots of people willing to feed her.

So this leaves every day from 330 to about 7 it 8 depending on how he feels. You don't have to come for the whole thing. An hour after work is fine. Please write it in the comments. As it fills up I will update as best as I can.

Finally. And this is a biggy..... next Saturday the 7th. NJ and I will drive to pick up sq at camp. Which means I will not be there at all that day (I am already anxious about it!)  Stephanie steinman has already volunteered to do til 11. So you can all sleep in! But who can plan ahead and book some time for next Saturday? We need to make sure there are no gaps because he certainly will be out of ICU by then, which means a bit less staffing and more for us to do.

Again, I thank everyone who is volunteering. Priority #1 jay. Priority #2 NJ.

Saturday, June 30, 2012

Tomorrow visits

Just to update, Michael 9, Jason Caron at 11. anyone else? Once others chime in, I will schedule my own visit

N.J. time!

I have left Jay to enjoy an extended visit with his mom and sister, followed by dear friends and I am off to find N.J. and do anything she wants! Any updates today will be left up to Jay, if he can.

Morning update

Jay js a bit better today, but he did not sleep well. Between the meds and the emotions that come after everyone leaves, it makes for difficult to sleep well. But he is ok and in good spirits. He might try to walk soon. He read all the comments but then breakfast time so ni time to write yet!

Friday, June 29, 2012

a love note to nj

My dearest squishy-tushy, you have been such a brave girl! one morning, we had a full house, and next thing you know, your big sister is gone to camp, your daddy got his new lungs and your mommy is spending all her time at the hospital. You haven't complained once. Everyday when you say goodbye, you don't know who is going to pick you up, who's house you are going to end up at, you might not even sleep in your own bed... I am so sorry.... you are not even 7.... it shouldn't be so hard for you. But you are being so strong, and such a good girl. THANK YOU. Thank you for the videos you make for daddy, thank you for the hugs you give me to keep me going, thank you for rolling with the craziness and letting your other families pack you lunches. thank you for walking the dogs with me and for making sure Daddy has a charged iPad. Thank you for answering the door bell and being so polite to everyone and thanking them for their gifts. No little girl should have to do any of those things. But you will get your daddy back stronger. And then you can teach him to ride a bike.....

Does any one else want to thank NJ for her awesomeness? She can read and follows the blog faithfully.

this is going to be a long post!

This is what happens when I forget my charger... instead of 6 or 7 updates today, you are just going to get one really long one! For the record, I am totally stealing Amy's Q&A format. she is a lot funnier than I am though.

Q: How is Jay?
A: Better. Today was difficult, but they have some good meds going and the pneumonia should be under control in a day or two. It kept him from going for a jog, but he did manage to read each and everyone of your messages/emails/comments.

Q: How can I reach Jay?
A: Comment here on the blog. This is why we created it. We have so many people to keep in touch with: family, friends, work people, all the bloggers jay follows .... Updating everyone seperatly would not have worked. So we update here and you comment. When he can, Jay reads the comments himself, when I can't, I read them to him.

If you want to send Jay a more personal message or don't want to post for the world to see, just email him to mortimersdad @ gmail.com (remove the spaces, this is to prevent spam). Right now he is mostly just reading his emails, but I'm sure he will be writing very soon. I'm pretty sure he snuck in a few today!

For now, no calls at all. He did manage to make 2 calls out today, but it's quite complicated as they have a very very strict no-cell policy. So don't be waiting by the phone for him to call you. Also, don't leave messages on his cell phone. That thing is good for nothing!!!

Q: Can I visit?
A: Yes! But here is the scoop on visiting. For now, we have to be masked, gloved and gowned. They don't like to use these procedures and this is why they were not in place at first, but right now they are. You can still visit. You cannot bring anything with you in the room. Your purse has to stay outside, you can't bring a book. The only exception is his iPad which gets specially cleaned before it goes in.

The visits are of 2 types: Active or Passive. What I mean is that if you just want to stop by, say hi, stay for 10 minutes and talk to Jay, that is fine. You don't need to pre-warn, to schedule. Just come. You might have to wait if someone else is there or just left, we try to space the short visits out a little bit to give him time to rest. The Passive visits are the ones I was trying to organize. It's the person who sits in the room while I am not there, stays for 1, 2, 3 hours whatever the case may be. You sit, you get him his glasses, you adjust his pillows, you keep an eye on the blood pressure number and you keep guard at the door and make sure the active visitors are respecting the rules.

Getting active visitors is not a problem. We are still a bit short of passive visitors, so if you have an hour to spend on a VERY uncomfortable chair doing nothing since you can't bring anything, then by all means, sign up! (And if you are coming to see me then don't worry. you can come anytime and hang with me in the waiting room. if you are lucky, there will be a soap-opera worthy family in there!)

THANK YOUS:
First off, a huge thanks to Gideon for taking the morning shift today! I got to have breakfast with NJ for the first time since the surgery. She is doing great, but this is VERY hard on her. She misses Jay, she misses SQ who is at camp and she misses me since I'm pretty much not here.... Which brings me to my next thank yous: Debbie and Paul. When I realised today that I would not be coming home at 4 as planned, 1 quick message and NJ was having a lovely Shabbat sleep-over at her 2nd family's house. Knowing she is there allowed me to focus on Jay. Thanks to everyone who dropped by at some point today, some just to peak in and say hi, some to hang out and keep an eye on the monitors with me. And to Dr. Gruber, Jay's doctor of 25+ years who came to check on him. Thank you to everyone who brought stuff to the house: delicious challah and cake, a little wine, I'm sure there is more. It's all very much appreciated. We freeze a few things to last us for the long-haul, we eat what we can and we are also sharing some of the goodies with the nurses. So be assured, it's all very much appreciated and not going to waste.
I am not thanking my 3 magical fairies who each managed to spend time with me today AND each brought something I desperatly needed: good knitting, lunch, and a phone charger!( no, that was not a thank you)  And finally, a special shout-out to poor Dee.... Our beloved manager who is running things for us during this time. We haven't worried about the store for one second because we know she is keeping things running. To the Snod-Gals as well, thank you for covering all my shifts and not giving Dee grief about it!

All right, that's quite enough.

Late day update

Rough day today, jay has pneumonia. It was to be expected so it is not of grave concern, but no walking or sitting.

I forgot to bring my phone charger so in about 3 minutes I will be unable to communicate. If you text and I don't answer, don't panic, nothing is wrong, my battery is dead.

Sent from my iPad

All un-room visits in hold for now.

I was going to write about N.J. and I's leasurly morning but by the time I got here, I could tell there was a small set back
He has fever and his blood pressure is low. Effective immediately no one in the room except me. If you were planing to come you can come in and say hi to him, but the only visiting you can si ia with me in the waiting room. (which is fine.)
For today N.J. is off to a sleep over because I have the most amazing friends who jump at my calls. Deb, you are an angel. I will stay all day and keep you posted for tomorrow.

Thursday, June 28, 2012

jay made the gossip sites

anyone who knows me know I refresh 3 sites per day constantly: my Facebook, the store twitter, and Laineygossip.... Apparently the Snod-elves have been up to scheming during our absence, because after a very long day this is what was waiting for me on my laptop.....
http://www.laineygossip.com/Articles/Details/23946/June-28--2012-Smutty-Shout-Outs
yep.... that's the store, and Jay, on LaineyGossip.. an internet trifecta!

Hello!

I want to thank everybody for all of their comments. It's heartwarming, overwhelming and inspiring. But let's get down to business! As many of you may know, I have some conservative leanings. I still yearn for the days of Bush and Stephen Harper is still in my good books. However, a couple of days of hanging out in the ICU has really helped liberate me. One must get used to having one's jewels willy nilly to the breeze. I have no boxers, no tighty whities, I am just au naturel. I am constantly on display. Every time I get up to walk, every bandage change I am constantly being massaged and adjusted. I feel as though I could work as a gigolo or club 281 with no inhibitions. Furthermore, despite cleaning all of appendages numerous times, everything is done in a professional and classy manner. 2 thumbs up from this reviewer and I hope the Good Times can keep rolling on.

Sent from my iPad

All tired out

I know you were all expecting a blog post from Jay. But he has a very busy morning. First they took 2 of the drains out, changed the dressing and the he visited the facilities for the first time... Nat was right. This is JUST like an adoption blog! First poop! (people who know Jay know how much he loves this topic, trust me, this is ok with him!)

After a good rest, I had to run out to go briefly pass out during a blood test, so I left him to take a looong walk with Melissa. Apparently. He did not really follow the no-talking rule. Or maybe he was so happy to talk to someone other than me! He followed that by yukking it up with Steph and Cliff. Good times!
So now he is wiped out and won't be blogging yet, but he read all the posts and every comment.

visitors needed fri/sat/sun

I am trying to plan the next couple of days. Because he is still in ICU, his care is above-and-beyond and I know they are there every second, but he will be moved to a post-op floor, and while I know the care will be just as good, it won't be ALL THE TIME, and at this point, we still need someone in the room with Jay from 7 am to 7 pm.

Today is covered (you can still come by if you were planning to, that is fine, I just mean there are no gaps in coverage!). But the next few days are bit sparse. I will be there from 7 am to 4 pm on Friday. So far, I have no one at any point between 4 and 7. I know it's a difficult time, but if you can spare 1 hour on your way home, that would be great, it doesn't have to be then entire 3 hours.

Same thing for Saturday and Sunday. I can either do days or afternoon-evening, but I do need to be home with NJ at some point. So if you were planning on coming this weekend, can you please comment on here and let me know when. This way I can plan around it & we can avoid people showing up at the same time.

Because there should NEVER be more than 2 people in the room. And it's totally necessary to mostly sit there and hang out. Believe it or not, I mostly talk with/to him only a few minutes, then he sleeps for an hour. That is the way it should be. Jay can get pretty chatty, but it's important to remember the lungs are new to him and he needs rest. Plus those long walks make a guy sleepy!

So please use the comment section to let me (and Jay!) know if you were planning on coming.

Wednesday, June 27, 2012

feeding the nurses

I totally forgot one thing about today! And in the end this is for us to remember in the years to come...
My house has been overwhelmed with delicious deliveries! Some we can eat right away, some have been frozen, but in the end, it's just me and NJ and the baby-sitter, we will never get through it all! So this morning I packed a full box of danishes, cheese bagels, anything and everything that I thought people would eat and I brought it to the ICU nurses station. Jay's nurse was not there, but I asked the head nurse where they kept the food.... Stunned silence. Did not know what I was talking about. Food I said, I brought you guys food, to say thank you, it says so on the box, see: To the staff, thank you so much from the Sokoloff family and friends.

Turns out, nobody bring them food, ever. They didn't know what to do, where to put it. Every single nurse/orderly/staff member thanked me at some point today. So I am passing along the thanks since all I did was transfer it from my fridge to their stomachs.

and for the record, this does not count as my 1 thank you for the day, so bug off, you know who you are!

End of day 3

It doesn't seem possible that is has only been 3 days. We have been waiting for so long and had several scenarios of what would happen. NONE of them included a full double-length hallway walk on day 3.

Today my fabulous knitting friends brought their yarn and tons of food to the waiting room and spend the morning with me, passing  the time and knitting. I kept popping in and out to see Jay but let him rest. And then, all of a sudden, the curtain opens and he's walking! It was amazing to see, and I ran to the waiting room to grab S. to make sure I wasn't dreaming!

Later I was able to leave him in the capable hands of J. who kept an eye on him while I ran around getting the iPad connected. What should have been a 3 min errand turned into a 3 hour one, but it's all done and Jay will be blogging as of tomorrow. His supper was supervised by his mother and sister, so it was a very full day once again.

I managed to stay up long enough to squeeze a little bit of time with NJ, who is being the most amazing trooper ever with all this turmoil. And at her request, Mortimer and Lucy came home at dinner time. These dogs are CONFUSED! They are looking everywhere for Jay and I am afraid I don't have the energy to pet Lucy to the levels she has been accustomed to by her Master Jay!!!

It ends up being a very long day, for Jay who has to do all the hard physical work and for me who has to do all the little things. But we are both elated and grateful for this wonderful gift and we will squeeze every minute out of the day!

Walking

Jay just walked up and down the hall. Twice.

Love from N.J.

Small oooooops

I have pretty much everything under control. N.J. and I had a great afternoon, yummy dinner with my dad and Hélène and then cuddled for hours eating banana bread and reading her the blog and everyone's messages.

But I am screwing up here and there. Like I drove to work instead of the hospital. And came *thisclose* to running out of gas. And I may or may not have my leggings on backwards.

I just saw Jay for about 3 min before being kicked out during his bath. At leastbit was being given by a female nurse today, so I am sure he is quite relieved!

Tuesday, June 26, 2012

evening report, with a killer joke!

I spent the evening with NJ. Kids resiliency is amazing, but she really needed mommy-time.
But Jay was in good hands. First his dear dear friend Shawna kept an eye on him and apparently made him well up and tear up, and then our ever-helpful good friend Gord went to make sure Jay didn't hit on any nurses or eat too many Willinsky's Specials,  This is the text I just received from Gord:
'yes, walking tomorrow is scheduled. Susie's doing the Couch to 5K', Jay's doing the 'OR to 50 meters'!'

At this rate, he will join Susie and I on a 5 K soon!

a very full day

today Jay got a lot of visits from his family, and they were SUPER GREAT at following the short-visits rules, so he got through it very well. He was pretty tired by them time everyone left, but he hit major benchmarks by sitting AND eating solids.

I left him early to spend a little time with NJ, who has been a trooper, but he has friends coming to hang out with him later and I trust that they will not try to entertain him too much! (you hear that guys????)

He declined the lunch option...

This one is for Amy

The lovely nurse improved my chair situation because I am the least annoying spouse on the ward and I follow the visiting rules.
Also she mentioned in passing that she was glad Jay liked the fan on because she is in menopause....
In Jay news, after 2 hours in the chair he is finally exhausted and fast asleep in bed.

Cereal!

Man Alive! as Jay would say..... There's no stopping him! 20 min after sitting in the chair, he is having cereal! Sadly, no raisins.... ;)

Sitting in a chair!

Hello from Dr. Guimont

While I just wrote that I would not put the surgeon's name, the internist. Dr. Guimont, thinks this blog idea is terrific and told me to say hi to all the readers! He is a prefect personality match for Jay and his visits are hilarious.
He is officially signing Jay out of ICU, but he won't be going anywhere because they have no space for him on the transplant post-op ward right now, too many successful transplants! It's a great problem to have! Si Jay will stay here for today, maybe tomorrow. But it is not out of medical necessity.

Tuesday morning

Jay is in great spirits and he just spoke to N.J. on the phone. She seemed very happy to speak to him and it put a huge smile on his face (and a tiny tear in the corner of his eye...)

The surgeon just stopped by and was very happy with the progress. (btw I am not putting his name. Those of you who know him know who I am talking about but he didn't sign up to be on a blog!)

Monday, June 25, 2012

24 hours later

Last night at this time I was sitting in the waiting room, rearranging the furniture. No, that is not a joke, I really did. In the long 10 hours between the time Jay was wheeled away and wheeled back, I was kept calm and sane by 3 of the dearest gals I have ever met. Most of what we said was hilarious and highly inappropriate given the circumstances.... I picked the right people to hang with me on horrible plastic chairs for 10 hours.

At one point, there was talk of destroying the bell on the elevator, which rang every. single. time. the elevator passed the floor. Do you know how many times a hospital elevator goes by in 10 hours? But we committed no vandalism, only sneaking wine because let's face it, we had to cope somehow. And cope we did.

By the time Jay came back up, we knew a miracle had occured. The amount of things that lined up yesterday to make this happen as smoothly as it did are too many to name: the right donor, the right Dr., SQ having just left for camp, everyone being there to help NJ (who by the way is having the time of her life with sleepovers and emailed me to say she wants to say an extra few nights!). The miracles are too many to count.

Today was nothing but astonishing and spectacular. Every milestone they set, Jay blew right past. Fastest removal of the tube, no oxygen 8 hours after transplant. And no coughing. Not a single cough. I have woken up to Jay's cough for 12 years. He has woken up to his own cough his whole life. And now, not a SINGLE cough. He can take DEEEEEEPPPPP breaths. Sure, he's uncomfortable, a little sore, extremely tired and for some reason, itchy as can be, but my goodness, he is doing miraculously well. The nurses are saying so. The Internist is saying so. He is setting records left and right.

Now we will both get some rest. It was a long day. Tomorrow, he will sit in a chair. And judging by how today went, I would not be surprised to have to write that he stood up.

Can I please remind you all to sign your donor cards? NONE of this would have been possible without the most generous gift of all, the gift of life.

Random facts

Before I forget all this due to sleep deprivation:
Hilarious moment last night at 2:30 in the am when the surgeon came to talk to us in the waiting room: both Mel and Steph knew him (jewish geography ftw!) And he took 1 look at the 4 of us with our massive bags of food and said 'this is a first. A room full of Jews in an east end hospital on st-jean!'
I have been forbidden from saying thank you (lets see if you can guess who said that....) But Thank You. To our fabulous friends who stepped in and took charge, got us to the hospital, got N.J. sorted out, fed me, kept me company against my will.
Jay had his first visitors today. He was thrilled beyond words to see both family and friends. But it was very tiring, so remember, short and sweet!

I forgot the thumbs up!

Visiting

Everyone is asking about visiting. Here is the situation:
Jay is doing VERY well, but remember that he is in the ICU and JUST got new lungs. So he is tired and he needs to rest. Also, not everyone in this ward is doing as well as he is. Rules cannot be broken. 1 person at a time, with mask, 10 min MAXIMUM even if Jay is smiling,  he needs to rest.
I will stay days and go home to N.J. in the evening starting tomorrow. He will be here for at least 2 weeks, so there will be LOTS of evenings and afternoons to see him. Not everyone needs to come today!
He is at Notre dame hospital. Google it. I cannot tell you where to park. ICU 4th floor. You can figure it out. ,)
Again, no matter what, they are very strict and it's for a good reason.

Tube is out!

At 10 the internists stopped and asked me for 5 min alone to check on him. When I came back, the breathing tube was out! He is breathing on his own with minimal O2.

Morning update

I came back at 730 and the nurse told me he had a very good few hours with no problems at all. He is breathing very well and they expect to remove the tube in a couple of hours, as soon as the day team is set up and ready.
The surgeon came by to check on him before going in to do another lung transplant, he was very pleased with how he is doing.
After 2 years on the transplant list, 41 years of living with Cystic Fibrosis, on June 24th at 12:30 in the middle of a pool party surrounded by so many dear friends, Jay got THE call he had been waiting for. It was surreal. We didn't really believe it was happening, but sure enough, by 4:30 he was being wheeled off to the OR, to re-emerge about 10 hours later with new lungs.

The nurses told me to start a journal. To document the ups and downs of the recovery. So after a few (very few, 3) hours of sleep, I did the only thing I really know how to do, the thing that I know Jay will love to take over as soon as he is able to do so on his own: I started a blog.

This will be a central place for our little family to journal this miracle, to keep all our friends and family up to date (so I don't have to repeat myself to all the different groups of people) and hopefully to be something our daughters can look back on one day to understand all the things they might not understand in the weeks and months to come.