Changes

Today Kaitlyn was on oxygen all day. We varied the amount she was getting at times so that we could check to see how she was doing on her own. She had 5 episodes today where her O2 concentration dropped dramatically in seconds! These were even while she was on oxygen. One time she dropped in the 50s.Very scary. When we talked with the hospice nurse, she thought that Kaitlyn may be having petit mal seizures, also called absence seizures.

Absence seizures involve a brief, sudden lapse of consciousness. Absence seizures are more common in children than adults. Someone having an absence seizure may look like he or she is staring into space for a few seconds.

Signs of absence seizures include:

• Vacant stare
• Absence of motion without falling
• Lip smacking
• Eyelid flutters
• Chewing motions
• Hand movements
• Small movements of both arms

Absence seizures last only a few seconds. Full recovery is almost instantaneous. Afterward, there's no confusion, but also no memory of the incident.

From the sound of it, it looks like this may be what's happening. It seems to be right after she wakes up from a nap, which we have been told that the transition from sleep to wake can also trigger absence seizures. We have seen the staring into space, throwing her arms up over her head and small chewing motions. When her oxygen has dropped, it usually looks like she is staring into space.

She hasn't been officially diagnosed as having petit mal/absence seizures but all signs are pointing in that direction.

We also changed her crib into a full size bed so that we can lay next to her and comfort her at night when needed.

It is definitely a new chapter in our lives and not an easy one. We pray that the episodes do not get more serious and life-threatening and that we are able to manage them at home rather than subject her to the hospital. Thanks for your continued prayers for Kaitlyn. She is a true miracle and I can't imagine what her little body is going through.