Hospital Happenings

We are still at CHOA at Scottish Rite. The past few days have been somewhat of a roller coaster, but I *think* we finally have answers and a plan.

Before I tell you about the plan, though, I want to thank everyone who has called, written, and stopped by to visit over the past couple of days. Your kind words, hugs, and support have meant so much to us and have kept us going through this hospital stay. We had gotten to the point where we were starting to feel physically and emotionally depleted, so the encouragement was just what we needed to keep us going. We are also grateful for the friends, family, and church members who have visited us during past hospital stays. It is always nice to see a smiling face and get a warm hug in such a terrible place.

Among other visitors, we had a nice visit from another hydro family that lives here in Atlanta. Our friend Molly and her daughter Meagan came to visit yesterday and brought all kinds of treats, which was very thoughtful. Meagan was born almost two months ago with hydrocephalus, and I was fortunate enough to get to meet her in the NICU. Meagan thought she could use some advice from the much wiser Claire, so the two of them had a little chat. ; )

Now for the news about Claire: Claire's bloodwork shows that her potassium levels are incredibly low, and we think that was the cause of her listlessness, pain and discomfort. We think that Claire's potassium got so low from being on ACTH. (The steriod we are giving her to stop her infantile spasms.) ACTH is known to lower potassium levels in some people, so this is the likely culprit for Claire.

Fortunately, we are starting our ACTH wean today. This wean has always been part of the plan from the time we first started her on the drug, long before we knew that it would lower her potassium levels. (ACTH is such a nasty drug that it's never a good idea to keep kids on it long-term.) We will be so glad when she is off of it completely! We have also been keeping Claire on a potassium drip over the past few days and checking her levels periodically to see if they are going up. They are climbing, albeit slowly.

On the seizure front, Claire has been having lots since we were admitted Wednesday night / Thursday morning. Her eyes roll back and she seems to "space out." Her heart rate climbs into the 170s and her oxygen saturations plummet to the 60s. We have had to give her klonopin on several occsaions to knock her out.

We are not sure when we will go home . . . we have been pushing for discharge tomorrow, but we will see if they will actually let us go. Our doctors feel comfortable that they have identified the cause of her low potassium levels, and they feel like we can use the potassium drip to get her levels up and then maintain it with oral meds until she is fully weaned off of ACTH. They also think that we can monitor her levels by having her labs checked every couple of days. I'm all for the plan, if it means we can go home sooner.

The only thing that may keep us here longer is Claire's increased seizure activity. I think we can manage it remotely with meds, but I hope Claire's docs agree.

We really want to make it home in time for the FOCUS fashion show - Claire can't miss her first modeling gig!

We'll keep you posted.