Flu Season has Officially Begun

Posted on 19. Nov, 2008 by Jillian in Glycogen Storage Disease

Ben caught the flu on Sunday. We quarantined him in our room, and he felt much better the next day, but by Tuesday evening our youngest, Dallin, had a fever. Even after a dose of Tylenol, we could only keep his fever at 100. 5 F. Inevitably we were out of lactate meter test strips, but at 8:00 cornstarch he threw up- even though we pushed it in pretty slowly through his g-tube. We decided to be on the safe side and put him on a feeding pump for at least the night. Since he’s grown so much since the last time he was ill we had to give Dr. Weinstein a call to figure out what rate to set the pump to. Of course, it was past 10:00 pm Florida time so we felt guilty, but what do you do? We paged him and in the meantime got everything all set up.

Have I mentioned I LOVE MY HOUSE!? In our old house it was so cramped that we had to store supplies we don’t use as much in boxes in the garage and random closets. In this house, we only had the poles for the feeding pumps in the now well organized garage. We have two feeding pumps in the upstairs medical station, and two feeding pumps in the downstairs/ kitchen medical station- complete with bags and continuous feed extension tubes. We even have a place for our scale which measures in both lbs. and kg. so that when Dr. Weinstein called back within a couple of minutes we were able to give him all of the info he’d need, and we were all set up to start the pump. While we weren’t panicked, or even considerably more stressed than usual, it’s amazing the feeling of calm that comes over our house as soon as we hear Dr. Weinstein’s cheerful voice- even if it is just on the telephone. “Hi, this is Dr. Weinstein, which one?” Anyone who can make you laugh when you’re still dripping with regurgitated cornstarch deserves some serious praise. Especially considering he was still in his office and we heard his pager go off at least once more while he was talking to us. He confirmed that we should alternate between Tylenol and Motrin every three hours to keep his fever down, and gave us the rate for his feeding pump.

Baby sick-o wasn’t quite ready for bed, so we had a bad parent moment and we set up a T.V. in his room and let him watch movies until he fell asleep.

Now, the icing on the cake… We have C.N.A.’s five nights a week to do cornstarch for us. So, by the time our C.N.A. got here for 10:00 cornstarch I was able to give her a chart and written directions to check Dallin’s b/g levels and fever every hour as well as checking to make sure his tube stays connected and the pump stays on. In the morning I was just able to read her notes and see that he did just fine all night- and I slept like a baby. Does that fall under the “bragging” category?

This morning was a little more interesting though. Ben had a couple of early morning meetings, so I had to take Mark to school- along with his younger brothers (including baby sick-o and his pump). It was a rough morning, but we have a hook in the car meant for hanging dry cleaning on that fits the bag pretty well. Unfortunately, Dallin is big enough to reach it and pull it down now, but at least it didn’t pop open and spill all over us.

We were a couple of minutes late, but Mark’s aide, Brooke, saw us coming and kept the door open for him so I wouldn’t have to check him in at the front office. That probably would have led to a better blog post, but I’m grateful I was spared that particular experience. The school nurse also checked his b/g and temp at school then gave me a call to let me know Mark was doing fine. I LOVE OUR NEW SCHOOL!

Dallin is doing much better this morning. His fever is under control (with medication) and he’s squirming all over the place so we’re going to get him off the pump and do ½ dose cornstarches twice as often for him today, and I think he’ll be fine by tomorrow.