insult

Noah is really struggling right now. He doesn't look too bad from the outside - still the same cheerful, silly, Lego-loving boy - but his labs are showing that something is happening inside of him.

I've briefly mentioned some problematic labs he's had - they seemed to be getting better on their own at first, but subsequent labs are showing a worsening trend. I'd held off mentioning it because I wanted to keep things positive near his birthday, and because I kept hoping that the NEXT set of labs would look better.

In a nutshell:
1. His liver enzymes are up. These enzymes are produced as a result of tissue death in the liver. Strangely, these numbers are kind of bouncing up and down with alternating lab draws - always elevated, but ranging from 100+ to 300+ and back again (they should be 30-40). Something is making his liver pretty unhappy, and we've ruled out pretty much every suspect except TPN-induced liver damage.

2. His blood counts keep going down - his hemoglobin, platelets, and white blood counts are all down and keep getting lower. His hemoglobin is holding more stable than the rest (falling more slowly). His iron is not down - it's up.

3. His blood glucose (blood sugars) are down. Despite the massive amounts of extra dextrose (sugar) he's getting around the clock, his blood sugars are typically in the 60's right now. Sugars below 60 are very alarming for him.

No one is able to find a tidy explanation for this. (Some of you mito moms are probably jumping up and yelling "macrophage activation syndrome!" right now. It's truly odd - we're seeing the same pattern of labs you'd see with something like that, but not the intensity.)

Dr. B consulted with Dr. L, Noah's truly brilliant, outside-the-box thinking infectious disease doctor today. She feels that Noah (maybe more specifically Noah's bone marrow) has taken some sort of significant insult that's causing all of the strange blood count issues. The thing that frankly terrifies us is that we CAN NOT pinpoint anything that would have done this. It's hard to believe that Noah of all people could have gotten a virus with no symptoms at all. It might be more terrifying to think that he did get a virus that mild but that it wreaked that much havoc in him. This could also just be the mito monster hitting harder than ever.

She wants to do a bone marrow aspirate and see what's going on there. That's an obviously invasive, painful procedure and Dr. B asked if she felt it would be safe to sit tight for just one more week. She agreed that it would be OK, so we'll redo labs next week and plan a course of action from there.

I know that a lot of this is just medical mumbo-jumbo to a lot of you, and I wish I could make it more clear. The bottom line is that something is attacking Noah right now, and at this point it's winning. It could be the mito, in which case all we can do is run harder and faster trying to put out even more fires. It could be a virus, which means that he's gotten very, very vulnerable to the effects of even extremely mild illnesses. Either choice stinks.

We're not sure where the liver numbers fit in here. We've systematically ruled out every potential culprit except for his TPN, which he needs in order to live, or an insult from whatever is hammering him right now.

We're not sure what's going on with the low blood sugar. That is completely baffling. He gets his TPN around the clock plus a LOT of very sugar-rich extra fluids around the clock. This makes no sense at all. Dr. B is consulting an endocrinologist. He's hoping to get some direction so we can draw labs at home now rather than waiting for a new patient appointment slot to open up. The current theory (OK, guess) is that for some unknown reason, Noah's pancreas has kicked into hyperdrive and is cranking out a boatload of insulin. We don't want him to burn out his pancreas and flip into diabetes, so we need to get a grip on this.

Noah's lost a lot of ground quickly here. He's back to the energy levels he had before we went to MUSC. He's sleeping and resting more, and playing less. Whining more, and smiling less. He did have a blast at his party, but a careful observer might have noticed that he never stood if he could sit instead. Even so, he was wiped out and hurting the rest of the day and all day Sunday.

Right now this feels like a scene from a tense movie - we're in the woods in the dark, and while we know the bad guys are out there, we can't see them. We're not sure how many are out there, or how powerful and dangerous they may be. Our swords are drawn, but so far there's nothing that we can actually fight. We hear the branches snapping, but until the enemy shows their faces, we can't start winning the battle.

Please pray that these things, whatever they are, show themselves soon so we can stop losing ground and start fighting back.

Blessings,
Kate