At times, even when we are with her, she is disconsolate. Any attempt we make to appease are futile. Then, after a bit of time, all is ok. Often we are able to abate her grinding with a large rubber ring placed inside her mouth. Any stimulus to the inside of her mouth tends to stop the grinding. This was not the case one month ago. We found that if we are consistent with the oral stimulation, she eventually will stop. As mentioned before, there are times when her frustration is due to how she is laying. When repositioned, she ceases and expresses contentment. It's nuts.
So I guess the best way to explain the upward trend Rachael has been offering is to take it by the various physical indicators:
She is using it much now. She is not able to make intelligible words; however, several folks, Nancy included, have heard an unmistakable 'Yes' from her at times. This is very new so we will be watching for it. She has gone from no sound at all to making sounds that look as though she is exercising both her tongue and vocal chords. Her voice is gaining strength each day. She is swallowing on command as well. Her bolus swallowing is not yet working so she is not able to swallow food as she is not at all conscious enough to chew yet. Her laugh is getting louder. What was just a big smile with a rush of air a few weeks ago is now chortles, giggles and an occasional louder quake of laughter. When we sing or some of her favorite music is playing, she makes a unique repetitive sound that we assume is her attempt to sing. All in all, her voice is getting stronger but before therapy can work on that, we need to have better swallowing from her.
You might remember that Rachael contracts to her right side. This includes the muscles of her eye. In the early stages they pulled so far to the right that you barely could see the iris. She is now frequently bringing her eyes to 'mid-line' which shows muscle control and a change of muscle 'tone'. As it is now, she is 'toning' to the right. It is great to see her regularly looking straight ahead. As far as blindness goes, we do not have any indication that she sees. She does react by squinting when we wheel her toward direct sunlight. Yet, though she may be able to tell from very bright to normal light, we detect no indication that she is actually seeing.
Arm, Legs and Hands
The right contraction or toning is head to toe. Her right leg prefers to be bent up, her right arm is at home bent up to her chest. Her head is pitched so far to the right that her chin will rest on her shoulder. To give you an idea, and go ahead and try this, lay down, bend your right leg up and contract the muscles, do the same with your right arm up to about your breast bone, contracting your muscles tight then tilt your head so that your chin is on your shoulder. Lift your shoulder up, straight up to your chin. Now hold that position for about 3 hours. I can only do it for a few minutes. She is like that most of her day. If she were to remain like this without attention, she would suffer contractures Nancy has saved Rachael from contractures, which is when the muscles shorten in response to the contractions and are frozen in position. Nearly every day she has been working Rachael's head, arms, legs and feet to keep the muscles active. The sovereignty of our Lord rules. You may not know this but Nancy finished Massage Therapy School about a year ago. Following that she took lessons in Active Isolated Stretching from Aaron Mattes, a world renown sports medicine expert that has developed stretching techniques that are showing incredible promise in healing a variety of ills related to body stress and inflammatory issues. Utilizing the techniques God had her learn last year, Nancy has helped to keep Rachael's range of motion. Aaron is a born again believer and begins his sessions with that fact so that no one is in question of where he stands. AIS has helped greatly in PT and OT results and is responsible for her ability to respond as she has. Shane, a student of Aaron's has visited us several times and brought Rachael to sweet levels of calm by stretching her with these methods. I have seen her spasm free from his work. If you have a loved one suffering from TBI and is contracting, find out about these techniques. The result once contracture has set in is to cut ligaments. Not a good option. We are expecting splints this week for her arm and leg. Her feet might need to be treated with botox to relax the muscles so that they do not turn in. There are times, very often, where her right ankle is turned so far left that it is at a right angle! Can you imagine how that would hurt! Still, Nancy has been able to stretch Rachael's feet to keep this from being permanent so far. Nancy is showing me these techniques so I am able to now assist in her absence. We also learned a method of very lightly massaging specific areas of her neck, arms and legs to cause relaxing. Using this technique, we are able to get her head centered.
The dreaded but necessary Foley! Well it was removed earlier this week. I had nothing to do with this one! We are trying to retrain her bladder. There has been some success but if too much time goes by, she is 'straight cathed' and voids via a tube. Once finished, it is removed. This is better than having the Foley in her all the time. Much less discomfort for her, less hassle for everyone. Yet, getting the tube inserted is an incredibly difficult task. Rachael is a very strong girl. We continue to pray that she now will be off the catheter for good.
Remember that storming I was talking about? We have not seen it in about 2 weeks!
Heart, BP and Vitals
Rachael has been on two drugs that help to keep her heart rate down and blood pressure normal. We have noticed that her heart rate has been dropping to the 40's at times so the orders were changed and now she gets the 'lopresser' once a day instead of two times. It looks like her brain is being able to better regulate her heart. Her temp has been normal for several weeks now. Remember from January through half of March she has had what we call a fever. Folks call it a neuro temp. It seems to be gone.
Thought I would save the best for last. Today, she was able to repeatedly swallow on command and raise her arm on command for the therapist. This is big. We are pray that she continues.
This is the wildest part. She laughs at jokes, image or picture jokes. She has several CNA's that she loves and as soon as they show she starts with the big smile. Sometimes things are said that are funny but given in an off hand way not at all addressed to her and she laughs. She is understanding what is being said with a much higher frequency than before. Just like the laughs, she knows often when we depart and she cries if we are leaving. We have taken to quietly sneaking out with no audible clews (keys, bags etc.) to lead her to know we are going. As it stands, we believe that her reactions to pain, fear, joy and sorrow are all exagerrated. This is in accordance with higher levels of cognition. We are anxious to get the official word that she is a Ranchos 4! Keep praying.
So slowly we are on an upward trend. Rachael is not at all at a plateau. Her big broad smile, her laughs and just her lovely way have endeared patients and staff at Heartland. It is not uncommon at all for someone to take time out just to hang with her for a while or to console her when she is down.
Our plan is to get her home soon. There is much to do before then to prepare the house for her. I will be posting more on that later. Nancy has some incredible insights the Lord has offered her in her journal and we will be getting that up soon.
Nancy and I had a date night courtesey of a family whose child Nancy taught. They set us up with Christ Tomlin tickets. We needed to be there that night. It was great.
- For Ray Dick of Calvary Chapel Bradenton as he adjusts to the loss of his wife Elaine
- For Rachael to begin to have full bladder control
- For the grinding to stop.
- For quick setup at home for Rachael's return
- Continued healing and most of all...
- Praise to the author of our faith, our creator, our savior, our father and our friend Jesus Christ!