We lay him on an incline for hours, he's on O2 around the clock, we sleep right next to him. He's using all his accessory muscles to help him breathe. It means he's working very very hard to get air and oxygen into his body. His lungs aren't strong enough to do it on their own, so his other muscles start to help the lungs push the diaphragm up so he can expel air. This is a bad way to breathe, the human body cannot do this for very long, it's exhausting work. Oliver is exhausted, on top of this type of breathing(called "pulling") the medicines we've been giving him to keep him comfortable make him very sleepy. He's been sleeping a lot, close to 20 hours/day, but even when he's sleeping he's struggling to breathe.
We start him on the second antibiotic and almost right away it starts to cause him major gastrointestinal distress, cramping, diarrhea, he was dehydrated and miserable. We stop that antibiotic. Now what? There is another option, but it's what our nurses call "a big gun" antibiotic that is even broader spectrum than the second, meaning it will likely cause even more gastro issues. It's also in the same family of antibiotics that caused him problems in the past. We ask about trying one that worked well in the past that we'd taken a break from because his body had stopped responding to it, but maybe now it would?
Our hospice nurse says she's going to be completely honest with us, she's not so sure that the "pulling" is caused by the pneumonia. Yes, he has pneumonia, but there might be more at work here, like his tiny body is tired, and starting to give up this fight. He's been fighting for just over 2 years.
Recently his hands and feet have been going from hot to cold, hot to cold. He's had a very rapid (133bpm) heartrate and a high fever of 102*. He's had mottling, cyanosis, Cheyne–Stokes breathing, all of which are signs of someone dying. We've seen a few of these symptoms before and he's overcome them, he's rallied and gotten better. We've never seen this many symptoms all at once though. But at the same time, the mottling comes and goes, the breathing improves and worsens. His face will look rosy and pink, and then blue. It's seriously messes with us, we don't know what lays ahead, we just don't, and so we smile.
That may sound crazy, but we smile, we laugh, we talk, we reminisce. We will have our whole lifetimes to be sad, cry and miss our beautiful blue eyed boy. A boy who has touched the lives of thousands of people, thousands of people who will hopefully learn that life is short, that life is precious, make each moment count. Every. Single. Moment.
So here we are, maybe in his last moments, maybe not, but it doesn't matter, we're not going to spend them being sad. We're holding Oliver and laughing about the time he climbed climbed on top of Pippa and tried to ride her, laughing about the time he shoved cookies into the DVD player, and thinking he was great at hide-and-seek by hiding behind a curtain with his chubby little feet sticking out the bottom. We have our whole lives to be sad, today we choose to smile and be happy.
