Roxanne Update

First, the good news: Roxy hasn’t has an observable seizure since last Thursday, 11/16. Hooray!! She reached the full dose of a new medication a week ago, and we think it may be doing the trick.

Now, the bad news. Last Friday night, 11/17, Roxanne was admitted to the hospital for a variety of reasons. Her breathing was rapid and congested, and we didn’t know why. She was also having trouble eating, so her intake had decreased to dangerously low levels, making her dehydrated. In fact, she was so dried up that it took a long time and lots of needle sticks for the medical folks to get an IV going.

Roxanne’s interest in food started to wane when she started taking her new medicine. We knew the drug might suppress her appetite, but we were confused when she started sputtering and choking on her formula when we tried to feed her.

Roxy got a chest x-ray on Friday night to make sure she didn’t have signs of pneumonia, which, thankfully, she didn’t. We started to hypothesize that Roxy had aspirated some of her food, which had caused the congestion. To really find out what was going on, Roxy needed a swallow study and upper GI test, but unfortunately, the people that administer those tests don’t work on the weekend, so we were left to cool our heels for a couple of days.

I wasn’t thrilled to have to wait, but I was relieved that Roxanne was getting the care she needed. After the IV, she got a nasal gastric tube – a feeding tube that went down her nose to her stomach. It sounds awful, but after it was in place, Roxanne seemed to forget about it, and she could get her food, hydration and medicine without gagging.

On Monday (11/20), Roxy got the tests she needed. The upper GI test showed that she had acid reflux, which can interrupt her eating. The swallow study used a fluoroscope, (basically a video x-ray) that allowed us to watch how the formula goes down her throat. It turns out that she was, indeed, aspirating a little formula while she drank, but after the specialist thickened the formula, Roxanne was able to swallow appropriately.

We feel very fortunate that we found some answers. If she had “failed” her swallow study, and hadn’t been able to eat, life would have become much more complicated. Instead, with thickened formula and a prescription for anti-reflux meds, we were finally able to go home on Tuesday afternoon. The congestion in her chest seems to be clearing on its own.

Of course, the question is: why is she having trouble swallowing? It could be related to the anti-convulsant medication she’s taking, or it could be caused by the seizures themselves. We’re dealing with a lot of variables, here.

But for now, we’re thankful to have our pumpkin back home. Have a wonderful Thanksgiving holiday tomorrow, and be sure to hug your family.