Another big day today! Joey is now minus one more chest tube and was able to briefly get capped off from his IV meds. That meant that we could go on a real walk (minus the walker…yippee!). Cruised down to the cafeteria for an evening snack. I packed the drainage tube, complete with sealed container of blood. Nothing says good eats like that. Hopefully the other folk weren’t grossed out, but honestly, too ecstatic to care.
Other exciting stuff: the walk was done with no oxygen for the first time. Oh my god! His resting O2 stats were good before we left and he managed our outing without any shortness of breath.
There is still some pain and he is moving pretty slowly, but is feeling good on the whole. We are all very happy.
Also wanted to write a quick note about flowers/plant life: thank you very much to the people who have already sent them, but if you haven’t yet, don’t. We had them set up nicely in Joey’s room today, but when his doctor came in and noticed them, he informed us that we are not allowed to have them. Because Joey is a lung transplant patient and is taking immunosuppressants, the bacteria that live in plants and soil put him at risk for infection. Boo hiss, but better safe than sorry. Thank you very much for the kind gesture; we all appreciate it so much! (FYI: the balloons, cards, and posters are still in his room and looking fab).
Can’t wait to see how he’s doing tomorrow!
Not really too much to add today, except he had a good day the whole day. Very little confusion, chest X-ray looking even clearer, went on a walk that was a touch longer than usual.
I’ll write more when new developments occur. In the meantime, everything seems pretty stable.
P.S. A few people have been asking for our address lately. It is:
1112A 361 Front Street West
Yesterday Joey was quite confused. Today he was much better (for the most part). This morning he was his old self again; totally quick and on the ball. This evening he was a little confused again, but not as bad as he was yesterday. Apparently this is totally normal while they are working out what dosages of drugs he should be on. I spoke with his doctors tonight and they are going to review things in the morning when the whole team discusses his case.
Other good news: he was moved out of intensive care today and down to a regular ward. One more chest tube came out, as well as his catheter (I think he was happier about that then he was about getting his lungs. Not quite, but pretty darn close). He still has a few tubes, but it is getting way easier to move around. He was also able to walk a little bit without the walker today and was much steadier on his feet.
So that’s the news for today.
Well, they said there would be ups and downs. Luckily, when I left last night, Joey was on more of an up.
Apparently he had a really busy morning (before visiting hours) and he walked a couple of loops around the ward (with the chest height walker still). When I went into see him he was very confused (having a hard time finding words and articulating what he wanted, not knowing where he was or why he was there, etc). That was pretty scary and upsetting. Talked to the docs and apparently that is normal and can happen when they work out what dosages of the medications he should be taking.
After he slept for most of the afternoon, he was in much better shape. Went on another walk around the ward and he wasn’t nearly as confused (still the odd thing, but much more like his old self). He ate a little dinner, had a visit with his dad, Kelvin and Keltie before they went back to BC and then went to bed for the night. I haven’t been able to get the full report on how his night went yet, but when I called this morning he was sleeping, so at least he is getting a little shut eye before they wake him up for physio and tests and all that jazz.
News: Joey was moved to the step down unit yesterday (still intensive care, but not as intensive, intensive care…although it would be pretty tough for it to be any more intensive than it was on the medical surgical unit). Two chest tubes came out – three to go (there is still a plethora of other tubing though).
Current mood: Exhaustion.
Plan for the day: Going to the hospital in 94 minutes and counting.
More tubes out today. Down to about 10 now. Woo hoo!
Joey went on his first post operation walk today. He had to lean on a chest height walker and was waaaay uncomfortable, but he did it. Also did a lot of relocating between the bed and the chair today. They are really happy with that; the more movement the better.
He’s still really drowsy and has reaction time which is extremely slow, but he is able to do some things for himself again (blowing his nose, scratching his face, eating “the best jello he’s ever had in his life”…well, I guess it would be if you hadn’t eaten for a week, wouldn’t it?)
Well, I’m off to pack him a bag with luxury items like socks and a toothbrush. A B C you later.
Things have improved a lot today. The breathing tube came out and Joey is much less agitated. He is definitely not totally comfortable, but he is tough; he can handle the pain. When we talked to him today he could focus on us and respond (very hoarsely). Someone’s home!
Other positives are that a lot of the tubing came out. There’s still a lot there, but the less tubing the better. After they removed the tube, they got him to sit up in a chair for a little while so that he could try and clear out his lungs. It is amazing how much progress was made today.
He is still very tired, but it is so nice to be able to talk to him and see that he can hear us. He even sassed back a couple of times and winked. Still makes me weak in the knees. What a guy!
Hopefully there will be more good news tomorrow.
The bleeding between the lungs and the lining appears to be getting better. His stats are still fairly stable but he is still on the ventilator. Right now they are striving to find a balance between reducing his sedation and waking him up without getting him agitated. Hopefully things will keep improving and we will be looking into his baby blues tomorrow.
That’s it for now.
Thank you all for your kind words and wishes. We all really appreciate it. I haven’t been checking our email (not home enough and when I am I’m trying to cram in as much sleep as possible and get ready to head back to the hospital). Sorry if you are writing and I’m not responding; I’m just a little too burnt out right now, but we love you all and thank you for the good vibes being sent our way.
Back to the transplant stuff: the bleeding appears to be slowing down and his chest X-ray looked much clearer today. There is a consensus that overall he is doing okay and they are still adopting the wait and see approach with the blood clot.
Other big news today: his ventilation status has changed. Initially when people get double lung transplants they are on a ventilator which initiates the breathing for them and then they breath along with the machine. When they are more stable, the ventilation changes so that the patient is the one initiating the breath and the machine just backs them up. Then once they are even more stable, they come off the ventilator entirely. This afternoon, they switched the setting on the ventilator so that Joey is initiating the breathing and the machine is supplementing his breaths. We are all very happy about this. His stats are looking good with this change. It is a step in the right direction.
He is still under sedation, but they are gradually reducing it. Hopefully he will be in good enough shape for them to slowly let him wake up soon. We’ll see how it goes.
Synopsis: the docs are very happy with where he’s at. It’s a long road ahead, but Joey is doing really well at this stage.
Will write more when we get news.
So here’s the score:
This is the official update site (obviously). There have been some rumors flying around about how Joey’s doing. Understandably, people are upset and sometimes things unintentionally get distorted when they are. So calm down everyone, take a deep breath, and read on.
As I wrote before, there were a few complications with his surgery, but Joey’s new lungs seem to be working well. The surgeon came in yesterday and was happy with how he is doing. The main problem that he is having right now has NOTHING to do with the original complications. That is a very good thing.
Right now, the thing that they are concerned with is that there is a clot around his lower left lobe, so some fluid has pooled AROUND the lung. The bleeding appears to be slowing down. Currently, the plan is to just wait and see if it stops on its own.
I realize that this sounds really scary and we are obviously very emotional right now as well, but it is also important to realize that nobody’s transplant journey is a totally smooth one. Problems are going to arise and we just have to deal with them as they do. Toronto has a world renowned transplant program. He is in very good hands.
We are spending as much time as we can up at the hospital, so I am updating as often as I can, but please be patient. Most likely I will be making posts in the morning before I’m allowed to visit. That’s all that’s happening for now. Kirstin…out.