For tonight, our plan is for Shelley “I be there” Labree to be with Joey for the first part of the night and for Momma R to stay with him for the second half. They are going to watch his respirations. I intend to go home, pop an ativan and hopefully get a good sleep so that I can take a shift tomorrow. At least that will make for a couple nights of people watching to make sure that he is okay.
Tonight the pain doc guaranteed Joey that he would be safe when he increased the dosage on his continuous infusion (the goal is to be stable on the continuous infusion and not need the breakthrough pain medication. This helps to avoid peaks and valleys. The aim is to not need the breakthroughs; the hope with this is to end up taking less pain medication overall). The pain doctor said he guaranteed Joey would be safe at this dosage. Joey stuck out his hand for a shake. In Joey’s assessment, the doc either means it, or is a really good poker player. Let’s hope for the former.
K & J
I recently received some well-intentioned feedback on one of my posts that I did not take well. My delay in writing is because I’ve had a hard time getting jumpstarted again.
Dealing with CF is hard. Dealing with the reality of transplant and the possibility of Joey’s life ending is harder. He is a wonderful, positive, outgoing, amazing person. He is the toughest guy I know and is my rock. I can’t imagine my life without him.
Although I am an outgoing person, I am also extremely private with the personal details of my life. This makes the whole blogging thing difficult for me. I do it because I know that people care and want to know what is going on with us.
I am honest in my posts with what I am thinking and feeling. People tell me that they can tell how good or bad things are going based on the tone of my posts, so I do my best to speak how I would as if a close friend were in the room with me. That said, I also like to pretend that no one is reading them because that makes airing the extremely personal details of our lives a lot easier for me. On the flip side, we really enjoy the cynical comments that make us giggle and the love we receive through the mail and internet. It helps to ease the sting of what is happening to us. And there is a lot of sting. Again, and again, and again.
Both Joey and I rely to a large degree on our sense of humor to carry us through the tough times. Our intent with the posts is never to offend or upset anybody. That said, I believe that censoring myself too much makes my posts disingenuous and less candid, which for me kind of defeats the purpose of doing this. Hopefully that makes sense and nobody takes offense. It pretty much comes back to the rules and regulations we laid out on this site when we announced our wedding. (Yes, in true golfer fashion, we had rules and regulations that were laid out prior to our wedding; same goes with the blog).
Moving on. Joey was doing much better yesterday (i.e. breathing more and was more alert. I.e. Not falling asleep 2 sentences into a conversation). His pain drugs have been switched again, so that is likely the culprit for the change. Dosages are being tinkered with slowly so that there isn’t another breathing emergency. Unfortunately, he couldn’t wake up for another period of time this morning and they had to give him narcan again. This was especially scary since he had been totally coherent and speaking to me 10 minutes earlier. The only reason we tried to wake him up was because one of the doctors came in to talk to him. What would have happened if it went undetected? Now Joey is awake and coherent again, but is in a lot of pain. We are all rooting for both his safety and some real pain relief soon.
In donor news, Jackson begins phase 4 of his testing today. Hopefully we’ll be able to visit a bit while he is in town. Can’t wait to sit down with him for a nice glass of chianti.
K & J
Today was marginally better. That said, things are pretty piss poor. We are nervously watching his breathing when he is asleep. When he is awake he is in massive amounts of pain, but the dosages of painkillers are being raised very slowly. Basically, his liver isn’t working properly, so it’s not processing things like it used to. This allows painkillers to build up in his system, which makes him sleep and his respirations decrease. They are trying to find a balance that works, but it will be slow progress.
We are all still very much on edge. It is extremely difficult to watch him in agony. Even more difficult to be in agony yourself.
That said, he had a few blips of positives today. He ate more than I’ve seen him eat in a long time (miniscule by anyone else’s standards, but I am happy about it). Most importantly, we got to see him smile a few times today too. Thank fucking god.
The message trickled down from the liver transplant team that Joey is still on the list and is still transplantable. That said, in their view, nothing has changed in terms of the urgency of things. This boggles my mind. I cannot wrap my head around it. He is exhausted, in pain, and his spirit is breaking. I am afraid and I don’t know what to do.
In terms of what kind of cheer he would like…any ideas? Maybe some DVDs? New pjs/hoodies? Cards? Pictures? Totally random gifts? Any other ideas? I’m at a loss myself. He is very withdrawn and depressed. I think he is scared too.
Okay support people, it’s time to rally. Wow me with your creativity.
We are still waiting for word from the liver transplant team. Joey is doing much better today than he was yesterday; that said, he still isn’t doing very well. The fluid that was sampled from his abdomen earlier in the week hasn’t shown signs of infection so far. That’s good. His belly is still very distended and he is still in pain, although it is slightly less than yesterday. Pain meds are being reintroduced slowly so that his body has time to process them. Most importantly, he is more coherent than yesterday and can actually wake up. Critical care is no longer involved, but are available if things head south again.
So things are better, but still not great. Several members of the crew are now in town: Siarah, Karley, Poppa Randy, Momma R and Daddy G. Big sigh of relief.
Today was a bad, bad day. I’m going to give the abbreviated version here because I need to get sleep. My body is all disoriented and I need to be on my game for tomorrow.
Momma R is here now and is staying with Joey tonight. The Critical Care outreach team is now involved and he is being monitored more closely. Momma R tells me that Joey is much easier to rouse now than he was earlier in the day. His pain meds have been discontinued for the time being to allow his liver time to catch up. Too much was building up in his system and making him difficult to rouse. Very happy that has changed tonight.
Earlier today the issue was raised that Joey might be too sick to transplant. The liver team are going to discuss him tomorrow. From what we heard today, he isn’t there yet, but he isn’t too far off from there either. His belly is full of fluid because of his liver dysfunction. Now there is fluid in his lungs and his breathing tests have dropped. The teams at St.Paul’s are doing their best to treat what they can and to get answers/put pressure on the liver team to make this transplant happen ASAP. He is very sick. I was told today that that Joey will not be getting out of hospital until after his liver is transplanted.
I was not doing well today. Thank god that I have people who are able to be there when I am falling apart. Like, to leave their job in the middle of a shift and come sit with me because I am having a meltdown. To have a mother in law who will hop the next flight from Calgary the instant I pick up the phone and ask. An Aunt who will literally help me get home when I am at the point where I can no longer speak, listen, or walk because of stress and exhaustion. To have multiple friends who will let me stay at their homes when I have nowhere else to go and bring us food and love and coffee and movies to distract ourselves from our shitty reality. We are lucky.
It’s Joey’s birthday on Tuesday. Anybody feel like sending him some cheer?
#606 1495 Richards St.
ERCP was done today. I have mixed feelings about the results. Basically it seems like we are stuck between a rock and a hard place. Things looked much better than last week: no stones, sludge, or puss. That’s good, but at the same time, we’re not sure why Joey’s pain has increased so much again.
In addition to being absolutely exhausted, he has been more confused and generally slower lately. This is part of the progression of his liver failure. Today was a particularly brutal day; he was extremely confused after his ERCP (essentially, he was hallucinating, forgetting he had lines in and almost ripping them out of his body as a result, was shaking badly and was unsteady on his feet). His respirations when he was asleep were also extremely low, so they had to give him a drug to block the receptors in his brain that the painkillers attach to. This means that his breathing increased, but so did his pain. He was a touch surprised to wake up to see me and 3 nurses hovering over his bed. What can I say? The J-man has a way of getting attention from the ladies!
He seems to be doing much better now; sleeping and breathing better. Don’t know what (if anything) can/will be done about his pain and increasing liver symptoms. Come on transplant!
Have you signed your donor card yet? www.transplant.bc.ca
FYI: I’m sleeping at the hospital tonight as per his request. Not the most flattering invitation in the world, but an invitation nonetheless. (He told me that he didn’t know why, but he wanted me to stay. I was assured that it has nothing to do with my charm or rugged good looks. Self-esteem is at a new low).