Thursday, June 24: Update

Our first hour of training as caregivers took place today. Tiffany and I were eager to learn about Claire’s needs and the tools to meet them. The session escalated when competitive opportunities were presented. I have to admit that Tiffany was faster at getting the correct dosages into the syringes. I, however, clearly took home the gold star after introducing a new technique to the nursing staff for cleaning the G-Tube lines. Our relationship has always had a healthy dose of competition beginning with the day Tiffany kicked me in the shins after a sound beating at air hockey. It was nice to rekindle that portion of our relationship today.

We were able to have some fun today after getting some uplifting news this morning. My mom stayed with Claire last night and was present when the neuropsychologist came to test Claire’s coma scale level again. We got a ‘confirmed blink.’ The test includes a light test for vision: the doctors shine a pen light into her eyes and check for pupil dilation and reaction. She will only blink if she can detect it visually. She did. Claire’s vision is improving. We pray and hope it continues to progress.

The results of the test came back better than we expected. Claire was previously scored a 1.8 on the Rappaport Coma Scale. We were amazed to see it had improved to 1.2. The score improvement came from the visual test and her auditory test. Claire had not reacted to the auditory stimuli in previous tests. She reacted to the ringing bell today. Claire also reacted better to pressure. Vocalization, olfactory and threat stayed the same. Overall, the test results showed that Claire is very close to the lower limit for ‘near coma’ and progressing toward a ‘no coma’ designation at an even rate.

Claire is still working on her sleep cycle. Her pattern changed last night. While she accumulated the same hours of sleep, they were more sporadic. We started tampering with her medication frequencies which may have had some effect. Tonight we will be doubling the dose on her seroquel which is an anti-anxiety drug that helps Claire’s agitation. It has been spaced out to carry her through the early morning hours. We hope that this normalizes her sleep cycle for her sake and the caregiver in the room. Everyone is getting tired and you can see the fatigue in Claire’s face.

Tonight my baby sister and her main squeeze, Brian, are coming out to stay with us for a few days. This will be the first time I’m meeting Brian. If his mom is any indication of his character, then the meeting should be a success. Brian’s mom sent us a package a couple of weeks ago that had charm necklaces with Claire’s name on them. They made Tiffany cry. While my sister has been tormented away from family since this began, I’ve heard that Brian has been taking care of her. That’s all I’ve ever wanted for both my sisters. So I’m looking forward to meeting him and only wish it was under happier circumstances.