How, how does she do it? For weeks on Liam lays there too quite. Doesn't speak, hardly opens a lazy eye' her heart rate climbs to dangerous numbers, her breathing drops and becomes too shallow, if she ever opens her mouth to speak it's only OOOOWWWWWies and "I don't feel well". It's difficult to explain to anybody who's not involved in the every day affairs what kind of thoughts and feelings we're going through when she's non-responsive and her body "broadcasts" negative signs. When it happens again and again and again over weeks and months, lets just say our thoughts and feelings are "not the best". As optimistic parents as we are, I'd not be telling the truth if I'd say otherwise.
But Liam proves us wrong again and again. Something changed for the positive in the last few days. Liam OOOOWWWWs a lot less, almost none; she sleeps more; she's more restful in general. What's been happening, as we mentioned several times before, is that they're trying new things with Liam all the time - until they find something that will address her pain with good results and on a "constant and consistent" basis. Constant & consistent in double quotes since not only they were never able to find such thing until now. Not only nothing worked, but even for what worked well for a few days somehow Liam got used to it and it stopped working. And so some pain killers, which worked in the past, gradually became less effective. But we were talking about the improvement of the past few days, remember? So what changed? As usual, with Liam it's hard to point at one single known factor. So here are several maybe's:
1. A Fentanyl patch. Beats me why it's working where other drugs failed, but why argue with success?
2. They are drawing more fluids out of her now during dialysis, which my relief the pressure on the whole system. Might.
3. Maybe another, only-Liam-knows factor.
The bottom line is that she needs far less pain medications, the color returned to her face, the shine returned to her eyes - which are open and aware and looking (not just staring into space), she started talking again - and joking.
Back when Liam was Liam, nothing made her laugh more than a loud and sudden sneeze. When the public became so healthy that there weren't enough ka-choo (bless you) around (probably thanks to the new federal health plan), Liam started introducing her own pretend sneezes. The words are coming out of her mouth as ar-choo (bless you). It's and old private joke and it's her signaling to those around her that she feels good and ready to joke around. So along with the other positive signs, the ar-choos (bless) are back.
When this feeling-better mode just started a few days ago, it was a bit scary, believe it or not. From moaning and OOOOWWWing all night long, Liam started sleeping well. Too well. He breathing became too shallow and the home monitor went off again and again and again. But then she settled down and started breathing better. Now all of the sudden it was TOO quite. Gradually every days brought some improvement.
It's always amazing how she comes out from a long silent period "ready to go": with the same old jokes, the talk about food, and the typical aura she brings with her.
Just to clarify, it's not as if suddenly Liam runs dashes or anything. She still spends most of the day laying down in bed. On the good days she'd sit up in her chair for an hour or two.
I don't want to be a party pooper, but we did see Liam making mini-comebacks before, only to return to the darkness. We're hoping for continuity of the good wave she's riding on right now.
So we deliver the good news with caution not to jinx it, but with joy and happiness nevertheless. It's the first time in weeks (months?) that we're experiencing some good news and relief. To add to the joy, we have a home nurse for some hours every week, which helps a LOT. And she's good at her job.
Our mood as a family swings with Liam's situation. Now that she's well, we're all better. To me it's most interesting to see how Liam, just by being Liam, impacts those around her. Her good mood is contagious. The medical staff, people who hardly knows her, are picking up on it too.
So what do we have left from all this blah-blah? Today the situation is pretty good. There's no guarantee that it will remain that way tomorrow or even within a few hours. As we learned already, things could change rapidly. But right now we're very happy. We're living the moment.
Tired? Who, us?
People ask me constantly how we're making it. How do we go on about it. How come we don't collapse from fatigue - physical and emotional.
The answer is simple: We can't. End of story.
No really, what would Liam do if we fall apart? We're such a long time into this ironman race, that we're sort of used to it by now. But maybe an ironman or a marathon race are not good examples. After all, a marathon, as difficult as it is, has a start and a known finish. We don't have a known end point. Maybe a better example is when you survive a plane crash. You find yourself in a desert, but have no idea which continent it is, let alone which desert it is. All you see around you is sand. Where do you go? East, west, north, or south? What's behind that ridge on the horizon, hope or despair? You have no choice but survive. Fatigue is irrelevant. It's very much the same story for us.
Mental exercise help, of course. The secret, to me, is that you learn to accept every situation and every moment the way it is. There are no expectation. And you tell yourself that whatever comes it's ok. This is not to say that you don't try to improve and optimize things - just that you learn to accept what can't be changed and be ok with it. Rachel probably knows how to express this better than me. But I'm the blogger here so you have to suffer from my mediocracy.
The bigger wonder for me is how does Liam "do it"? How does she climb out of the hole again and again and again. We're just her assistants. She's the one who's doing all the hard work. She's my guru. She doesn't preach anything and it's easy for me to love her.
How to stay in shape
At the office they gave us pedometers. The challenge is to walk 10,000 steps every day. The days I'm working from home I easily put on 15,000 steps. I just keep going back and forth to the fridge to get a snack. What a brilliant program!!!
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