Baby, it’s Cold Outside

The snow is falling in Vancouver tonight. It looks like Toronto snow. Coincidence?

Yesterday, I got out of bed and bought my “death dress” for Wednesday. Today I wrote a thank you letter to Joey’s liver donor’s family. Will read it on Wednesday. Currently listening to Billy Joel and attempting to organize a playlist for the slideshow. I am starting to get the sense that this will not be your typical celebration of life, much like our wedding wasn’t your typical wedding. Since when is anything that we’ve ever done normal?

Thank you again for all of the words of support. Apologies that I have not responded to them, nor is it likely that I will. Please know that it is definitely not due to a lack of appreciation.

Kirstin

Cystic Fibrosis Canada

Forgot to mention this, but it is important: in lieu of flowers, donations can be made to Cystic Fibrosis Canada. www.cysticfibrosis.ca We would also like people to register to be organ donors. Thanks a million.

Kirstin

See You Wednesday

Okay people, I’m back. Sort of. Today was my first voyage from the comforts of OJ’s house (my usual Vancouver abode), in particular, peeling myself out of my couch-bed. The reason? Caroline and I took Richard to get his haircut. There was no freaking way he was going to attend any event to celebrate Joey’s life with a haircut (or lack thereof) that made him look like a mad scientist. So off we went. I’ll tell you, the man looks sharp now! Could almost get a military discount at a hotel.

So, on to the details. A gathering will be held for Joey on Wednesday, March 2^nd, at 3:00 in Powell River at the Carlson Club (the old Moose Hall). It will be very informal, as per what he wanted. We plan on having a slideshow running in the background (not a “have to sit down and watch” type slideshow; more a mingle and see if you catch what’s going on…we have a lot of pictures. Thank you Darren and Dallas for taking on this formidable task). Pretty much the only other plan at this point is to start thinking of your funny stories/stuff you want to say about Joey, as there will be an open mike for people to talk about him if they wish.

I also wanted to thank everyone for the thoughtful comments, emails, and for checking their status or registering to be an organ donor. (If you have not done so yet, please grab your care card number and check your registration status at: www.transplant.bc.ca ).

See you Wednesday.

Kirstin

Joey

Joey died tonight after a long struggle with Cystic Fibrosis. He never gave up, but his body gave out on him. His kidneys weren’t working, his liver, although it worked for a while, shut down tonight (likely as a result of the trauma his body was experiencing), his lungs were filled with a dense pneumonia, and they were unable to keep his blood pressure stable. The ICU team at VGH helped him fight a hell of a fight, but even after pulling out all of the stops, were not able to save him. The infection was in his lungs, his belly, and his blood. It was too much.

We heard several of the docs say that Joey had nothing left in the way of reserves to fight off the infection because he had a long wait and was so sick before his transplant. He had a will of steel, but you also need to be physically capable to survive such a major operation and the recovery.

The best way that people can help, is to make sure that you are registered to be an organ donor. I am confident that if Joey had received his transplant earlier, I would not be alone, a widow, at 31. I do not know who I am without him.

A large portion of people I talk to are under the impression that they are registered to be organ donors, but when we check it out together, they are not (it is no longer on your driver’s license or care card). The biggest way that people can help other families not go through what we are going through is to grab their card card number and check their registration status at: www.transplant.bc.ca Then sign up if you agree with organ donation. If you can say with certainty that you would not be an organ donor if it was your child, or spouse, or sibling, or parent who needed a transplant to save their life, then don’t sign up. Otherwise, please make your decision known so that other families don’t keep losing their loved ones.

I also wanted to send out a huge thank you to everyone who has supported us year, after year, after year. Knowing people care goes a long way and we are eternally grateful. We are very, very lucky.

There is still no cure for Cystic Fibrosis, the most common, fatal genetic disease affecting Canadian children and young adults. In addition to our own struggles, both Joey and I are tired of losing our friends to this deadly disease. If people are interested in helping to find a cure for CF, or learning more about the disease, I encourage them to visit: www.cysticfibrosis.ca

I am at a loss. A massive, massive, loss.

Kirstin

Now’s the Time to Fight

Things got significantly worse overnight. They changed his breathing machine again to ecmo, which bypasses the lungs entirely. The ICU team are throwing everything they have at this bug, but things are not looking good. The ICU doc told us today that a normal, healthy person with no other problems would have a 50% chance of leaving hospital after being on this machine. Obviously, that is not the case.

We told Joey that if he is going to fight, now’s the time. I know he hears us; he is on a breathing machine that is supposed to be doing all of the work for him and is on a drug that is supposed to paralyze him. When we told him what was going on, he breathed at key points in the conversation. As in: “now is the time to fight if you’re going to. You can do this. You just need to rest and let the antibiotics do their thing. We love you.” Breath.

Now we just have to wait.

Kirstin

You’re Joe Whitford

Joey’s lungs are not good right now. All signs are pointing to a really bad pneumonia (the cultures haven’t come back yet, but he has every other clinical symptom, so they are treating it like pneumonia). The X-Ray taken tonight showed that his lungs were full of junk and there is much crap to be suctioned out. It looks like CF mucus.

The breathing tube is still in. He is currently on pressure control, which means that it is the machine, not Joey, initiating his breaths. Problem is, Joey is such a fighter that he is still trying to work at breathing instead of letting the machine do the work for him, so they are giving him a drug to knock him out again so that he can get some rest, which is what he needs to get better.

We were told at the meeting this morning that it will take over a week at the very least to get an indication of whether or not things are improving. The ICU team is very concerned about him. Right now, protecting his lungs is their first priority, with everything else taking a backseat. His kidneys still aren’t working, but dialysis is on hold for today at least. Things look good with his liver, although it is sluggish. It was nice to tell him that his liver is as it should be right now and that his blood pressure is stable. I am talking to him as if he can hear me; I think he can.

There is much talk about the lack of reserves he is running on. He was very run down before his transplant. Run down, but strong willed. “They don’t know who they’re dealing with”, I told him before I came home tonight. “You’re Joe Whitford”.

Kirstin

ICU Doc Meeting

Popped up to see Joey’s nurse before heading home (the J-man is sedated). We were told that his second chest X-Ray was not clear and that with the breathing tube back in, they were able to suck out a whole bunch of crap. So it looks like there might be an infection in his lungs, but we are waiting for samples to come back from that. We have requested a meeting with the ICU docs tomorrow afternoon so that we can hopefully get some info on what their action plan is.

Til we know more.

Kirstin

Fighter

No bile duct leaks; liver looks good. Generally speaking, however, things are not good. Here are the main issues we are contending with:

1) It will take his liver a while to recover.

2) His kidneys are not functioning. It will take time to see whether they will recover and if they do, how bad the damage will be.

3) He is overly immunosurpressed and is currently septic. They are treating him with antibiotics for this, but it is a big deal.

And, of course, to do tonight’s surgery, they had to re-intubate him. It had to be done, but the breathing tube is uncomfortable and puts his lungs at a greater risk than if he was breathing on his own. Boo.

But – he is a fighter. Tonight he said he wasn’t done. I believe him.

K

Back to the O.R.

He is having another operation as we speak. Things were heading south; we’re hoping they were caught in a nick of time. The surgeon is going back in to make sure that there isn’t a bile duct leak. (They suspect this because they found some bilirubin – a liver enzyme – in his belly where it shouldn’t be). Not sure how long the surgery will take.

More when he’s back and settled.

Kirstin

The Unofficial Word

The word is not official, but at first glance, the ultrasound looked good. For what it’s worth, I am happy with the new antibiotic he’s on; he’s been responsive to that one in the past. This afternoon he looked better than he did this morning and he is finally getting some sleep as we speak. His pain control was also better this afternoon. Fingers crossed for a better day tomorrow.

Kirstin