Wednesday, February 6, 2013


"Worry does not empty tomorrow of its sorrow; it empties today of its strength."

I saw that quote somewhere recently, and thought it is good reminder to all of us who have a tendency to worry. I do worry when it comes to my boy. I worry if he doesn't sleep enough, I worry if he sleeps too much. I worry if Jacob doesn't poop, I worry if Jacob poops too much. And I really worry when Jacob is sick. When I don't know if Jacob will be able to fight through. Then the worry will empty today of its strength.

Right now, I am struggling with a new worry. Since Jacob came home on December 1st, we have done loads of labs on Jacob every week. First it was due to Jacob being on a non-FDA approved drug, which can have certain known side effects. By doing weekly blood draws, we could manage and watch any possible side effects.

We should be doing monthly labs today, but we can't. Instead we're doing labs at least once a week, sometimes twice a week. Every week, there is at least something that is off and can't be explained with it simply being an error. Our biggest worry right now is Jacob's Potassium level. It is low. It has been low since Jacob started on steroids, but over the last couple of weeks it has been trending down. This is despite us giving Jacob banana puree daily, increasing his Potassium supplement 3 (!) times, and decreasing Jacob's steroids.

We're worried because the heart muscle needs potassium to beat properly and regulate blood pressure. You can't fool around with your potassium. It also worries me because I can't see anything on Jacob. I can't guess if his potassium level is low, high or within the range. Jacob's doctors across specialties are talking, trying to figure out why this is the case, and how we can get his level to stabilize. It can be the steroids, or it could be something else.

Over the last two months, I have worried about Jacob's kidney function, about his blood coagulation, about his B12 levels, about his folate, and now potassium. There is always something new popping up from the blood draws. Something we have to follow up on. Some things we need to act on, some things we need to watch. I am worried every time I get the results. I am worried what we will be dealing with next. And we can't see anything on Jacob. He looks good, his colitis and epilepsy are where we want them to be - gone (at least for now). That we can't see it on Jacob is I guess good. It means that we're catching things before Jacob starts to have symptoms.

My feeling is that we're going to have to continue with weekly blood draws for a while. Noone is willing to stop them until we get a more stable picture. And as much as I worry about the lab results, I would today feel even more scared if I didn't get my weekly check of potassium, red blood count cells, kidney function, and all that other stuff. I have never been this good at reading lab results as I am now; another thing that comes with being Jacob's mom.



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