Oliver is being treated for pneumonia for a second time. He's had two doses of antibiotics and seems a little better today than he did yesterday. Yesterday was tough. His breathing was so labored, like he was drowning and gasping for air. It was horrible to witness and I'm sure more horrible for him to experience. He needed several doses of morphine to help with the respiratory distress. I am aware that morphine doesn't fix the breathing issues, but Oliver is under Palliative care and the fear in his eyes was more than I needed to convince myself that morphine was the right thing for him. It reduces his perception of breathlessness and allows him to relax and stop hyperventilating. Our number one goal is to keep him comfortable and not afraid.
I never knew I had such knowledgable friends, and so many friends who are nurses to boot! But apparently I do because the Oliver's Team Facebook message box was flooded with tons of support, ideas for treatment and ideas for prevention. Team, you guys are great. Let me put some of your minds to rest, and for those of you without much medical experience here's a bit of a summary.
We're not sure what has caused either of these cases of pneumonia, there are a few suspected culprits and while there are many ways to try and prevent them, prevention isn't always possible. He could have caught a virus from someone and because he can't cough the mucus settled in his lungs causing a pneumonia, or more likely it's an aspiration pneumonia from his formula or his own saliva that he can't swallow. He currently takes a medicine to dry up his extra drool, but he also takes medicines that cause extra drool as a side effect! (Clonazapam) Ugh. We'll take drool over seizures though.
When it comes to his formula and feedings he's always sitting straight up on our laps through out and afterwards. We used to give Oliver bolus feeds, and we still call them breakfast, lunch and dinner, they are actually closer to a continuous feeds now. He's getting 75ml/hour(that's only 2.5 ounces). To finish each "meal" takes over 2 hours, so he's hooked up to the feeding pump for over 7 hours a day. We tried very slow night feedings but despite his bed being at an incline he still suffered acid reflux and woke up throughout the night in pain. We always thought we'd be able to tell if he was aspirating formula because he'd be throwing up, or suffering reflux (which he isn't as far as we can tell) but our nurse told us that people can silently aspirate with no outward signs of it.
Unfortunately pneumonia and other infections are usually how children with MLD lose their battle. Their muscle loses so much tone, their lungs weaken and they can't fight off the pneumonia. There are other treatments that "could" help besides an antibiotic, some pretty invasive, and others not as much. Some of these we are willing to try, others we are very set against. A lot comes down to quality of life issues and putting him through treatments that may have him live longer but suffer more pain. No. We couldn't do that to him. When his little body is tired of fighting this monster disease, we will have to make decisions that no parent should ever have to make. But we will need to make them thinking only of Ollie and not ourselves, because of course no parent ever wants to let their child go.