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 @ (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!)

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.....
yep.... that's the store, and Jay, on LaineyGossip.. an internet trifecta!


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!


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.


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!


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.