We have noticed very similar symptoms from her regarding both the storms and general discomfort. They are profuse sweating, grinding of her teeth, strong contractions and sometimes crying. The storms usually are accompanied by a low grade fever and very high heart rate (120+). The discomfort is with a heart rate in the low 100's, no fever. On any given day, we might have several hours of these symptoms, usually the discomfort oriented ones followed by a period of relaxing then a mood change to smiling or laughter. It is all so random. For instance, yesterday she laughed and smiled nearly all day. Today, most of the day she was in a discomfort type state, agitated and not too responsive. Later this evening she calmed down, laughed some and began to relax. Sometimes changing her position will alleviate the symptoms, sometimes not. There are occasions where I can divert her attention by softly speaking to her and sort of guiding her to relax. Nancy has had success with massages. We had been spending the late evenings with her to see if the distress was related to eating or bowels. This has not proven to be the case as we can not identify a correlation between eating and symptoms. Another possibility is her feet. They are contracted but are still able to be flexed. I have found that moving her foot or slightly suspending her right foot by placing a pillow in the crook of her knee helps. It is just difficult and frustrating to find a resolve. When she is not in this agitated state she is joyful or very quiet.
We have found she laughs at certain things that are said that she use to laugh at before. Jokes made around her regarding things she is very familiar with will get her laughing, sometimes even when she is frustrated or agitated.
Hanna is a gem. She is learning quick and jumping in to help when we are moving Rachael or performing other tasks that require both Nancy and I. Even when we are not working to serve Rachael, Hanna is talking to her. Today she played her Fluteaphone for her.
Keep Nancy in prayer for strength and discernment of when she has had enough for the day. She will go until she hits the wall. Rachael has a terrible problem of grinding her teeth. It is horribly loud and persists for hours. When we are with her and she is agitated, we have to hear it. It is difficult. Please pray for both of us to have patience.
Nancy bought some teething rings today for Rachael to bite on when 'bruxing' or grinding her teeth. The funny thing is that when we put in betwixt her teeth, she stops. So it falls out. Then she kicks in again.
The staff is overwhelmingly grand at Heartland. Praise God for CNA's. The work they do is a blessing to the families and the patients. Several have found a special place in our hearts.
- Rachael pointed today. Not voluntarily but she has the ability to localize those muscles. We are hoping that she will be able to point soon.
- She is raising her arm on command but only at certain times in the day. We need to have her do it at any given time to count as repeatable voluntary. Her response to commands such as 'raise your arm' is related to her state of calm or agitation.
- She is responding by laughing at jokes, words, phrases and sounds . I have not researched this aspect of coma but think only cognition would seem to promote a laughing response to such stimulus. Daniel got her going the other night when making a sound that use to make her guffaw. Nancy has sang several kid songs or silly songs to her that have always made her laugh and still do. She laughs at a lot of things I say that are meant to be funny. Picture jokes, jokes that offer a verbal image seem to make her laugh the most. Please pardon my candor but mentions in the guttural terms of passing gas make her laugh too! What a great thing that she has laughter!
- We played Casting Crowns live today for her and she began to make verbal sounds. We thought she might be trying to sing. It was a fun time.
We are not sure when she will be leaving Heartland. There are several things that are left to be done. Setting up the house for her arrival is a big one.
We again want to thank you all for your words of encouragement and most importantly your prayers. This list continues to grow. If you are reading this and have someone in your family that is a patient of TBI, we would love to add you to our prayer list and be in contact with you.
God bless and Praise our Lord for the grace of the gift of faith! Eph 2:8