Level III - Localized Response: Total Assistance
- Demonstrates withdrawal or vocalization to painful stimuli.
- Turns toward or away from auditory stimuli.
- Blinks when strong light crosses visual field.
- Follows moving object passed within visual field.
- Responds to discomfort by pulling tubes or restraints.
- Responds inconsistently to simple commands.
- Responses directly related to type of stimulus.
- May respond to some persons (especially family and friends) but not to others.
This update is a bit graphic as we want our friends to understand the condition that Rachael is in. Call it managing expectations if you will, but we want to be sure that you all understand the severity of her condition at this time. We continue to believe that God will heal Rachael and we do rejoice in the little stitches that we get. It just is not near time yet for a party or a jubilee. We remain tempered, sober yet thankful regarding the gains we see.
We cannot be sure what Rachael is able to see. Tests for tracking, both voluntary and involuntary eye movement do not concur with functioning sight. We do believe that she looks at us at times, for a short time, then moves her gaze away. If you turn your head just right, she is looking at you . She does try to follow sound. That we know for sure.
She has been very relaxed and not as active over the past 3 days. Her heartbeat was spiking to the high 140's to 150 and had to be tempered with medication. Those times of the higher heart rate are hard for her and us as she displays obvious signs of stress and discomfort.
She is beginning to experience contractures in her arms and legs. This distorts the muscles and causes unnatural bending of the joints. This is also painful to Rachael. She will randomly twitch and move her right leg and arm. We thought she was swallowing a few weeks ago but that was a misstatement by a technician. This inability to swallow causes mucus to back up in the back of her throat and cause a foaming at times at the lips and inside the mouth. Recently this foam was coming from her left nostril and required hourly suctioning. She remains with a trache. We have learned the basics of trache care, cleaning the area, replacing the inner cannular and suctioning. Suctioning is placing a tube into the trache and with a suction device much like that in a dentists office, suctioning out mucus from the lower portions of the throat just above the lungs.
Rachael needs to be turned every two hours to prevent bed sores. She needs to be bathed in bed on a daily basis. She is back to having a Foley catheter inserted so that she is able to urinate. She is not able to get up and go to the bathroom, yet all bodily functions are working. Nancy gives Rachael a sitz bath every day in bed using a child's inflatable play pool. She remains being fed via PEG tube.
Nancy has left the school to focus on Rachael, I have left my 2nd job to focus on Nancy and the family. Nancy's day begins with her normal time scribing the word (she is doing Psalms now) then off to school with Hanna and I. She then proceeds to the hospital. She is very stressed in the morning before she goes to see Rachael. She starts the day by finding out what has transpired the night before. This is often difficult in the morning as it is a very busy time for staff. She then checks Rachael for bedsore signs, waste etc. and proceeds to give her a sitz bath. One thing to remember is that Rachael can not turn herself on her side, she is not at all mobile. Each cleaning, each check is done with great effort moving Rachael so that these tasks can be performed. She will brush or shampoo Rachael's hair. This can be daunting at times as well as Rachael will often push her head back in response to the stimulus. Remember, Rachael is very strong. Nancy will then stretch Rachael's head/neck, hands, legs and feet. Again, Rachael's brain resists these movements and it takes great effort to effect a stretch due to the contractures. Between all of this is suctioning, cleaning up, wiping down etc. Once done with her stretch regimen, Rachael may be placed into a reclining chair using a lift especially made to move people. It is similar if you will to an engine hoist. The process to move Rachael from the bed to the chair can take 5-10 minutes of careful maneuvering and requires two people. Many of these tasks that I have mentioned are done with two people, often though, due to the volume of patients at this time of the year, Nancy does it alone with the exception of the lift. Nurses can not be expected to be with Rachael all day and night, there are many other patients. The care at Health South is excellent. They get busy and Nancy, an RN, steps up to fill the gap with Rachael. Nancy is exhausted when she gets home. She has spent 5 to 8 hours watching her daughter in the condition described. It breaks her heart. This alone is a great testimony of the power of Christ. Simply because she gets up in the morning and does it all over again. When Nancy is asked "how is it going?", words escape her for the emotion that smothers her ability to convey. She gets worn. We have decided that she needs to be out of there by 3:30 or 4:00 in the afternoon. Nancy is the kind of woman you read about in a great Christian novel or characterized in a Hallmark movie. The difference is that she is genuine, the real deal and I am in awe of my wife.
Rachael's transfer to a rehab facility has been delayed due to a temp of 101 last night. Doctors are checking for any infection that may be causing this. She can not move to another facility until the infections are cleared. Healthsouth Rehab Hospital spent a considerable amount of time evaluating Rachael with participation from their upper management. In the end she is simply not at a high enough level of cognition to participate in rehab there. She has the opportunity to go to Heartland here in Sarasota once cleared of any infections. Our desire is to have her rehab at the Kessler Institute in New Jersey, an opportunity initiated by Dr. Simon. They stated that Rachael could go there but only for 3 weeks due to medicare funding. The folks at Kessler feel that 3 weeks would not be enough time for effective rehab. We are finding out how much time would be needed and what the cost would be. There might be a possibility of going to a highly rated rehab center in Georgia. We have no details on this yet.
There are many ups and downs. A friend from church has a daughter on life support and stated that you will get two steps up and one back. That is how it goes. Whether cognition indicators, opportunities for rehab, the end of an infection, the end of a 'protocol', a good day for Nancy and I, a new hope, a word of encouragement, whatever, it all settles to minor small increments forward. Minor. Stitches.
What I have attempted to do with this note is to let you get a picture of what Rachael is facing and what Nancy is facing on a daily basis. If Nancy seems down, or worn, know now why. She has been in battle all day. If we seem to lack joy for a small stitch realize that we remain in love with our God and have faith in his healing ability and submit to His sovereignty but we are not at a point of celebration. You might think that is wrong. That we should rejoice over every little thing. We can not rejoice if we do not know if it is truly a sign of healing or something misleading. We take each day as it is given to us. We do our best to not get ahead and we remain faithful, thankful and walking in the joy that is only from our Lord for there is little of our own. We might not act 'joyful' by worldly standards but we have joy. It is a still and quiet joy. We do know that we should consider it all joy and we do. We discuss the blessings that come from this and believe me there are. Yet, it is a time for prayer, for caution, discernment and being sober of thought. Remember where the battle is and there is a huge battle going on for Rachael. We pray each day that her room is holy ground. We can't have a party when the enemy is right outside the camp. It is a time for battle. Prayer is our weapon. Our Lord is our defender and we thank you for taking up arms with us. Yes we still laugh, we still smile and joke around. We are crazy in love with each other. We are just in a battle right now.
A time to give birth and a time to die;
A time to plant and a time to uproot what is planted.
A time to kill and a time to heal;
A time to tear down and a time to build up.
A time to weep and a time to laugh;
A time to mourn and a time to dance.
A time to throw stones and a time to gather stones;
A time to embrace and a time to shun embracing.
A time to search and a time to give up as lost;
A time to keep and a time to throw away.
A time to tear apart and a time to sew together;
A time to be silent and a time to speak.
A time to love and a time to hate;
A time for war and a time for peace. Ecc 3:2-8
God Bless you and please continue to pray. Our God is amazing and He has shown himself over and over again to be in an intimate relationship with us. It seems that at times of such fear, loathing, complete helplessness and anxiety that we call Him not by a Name of distant, untouchable reverence, but by a name of endearment and intimacy. Father, yes always, His name is hallowed. Now though, more than ever we look to him as Daddy. Abba Father.
And He was saying, "Abba! Father! All things are possible for You; remove this cup from Me; yet not what I will, but what You will." Mark 14:36
Our suffering; Rachael, Nancy, Daniel Hanna and myself, is nothing compared to what Christ suffered for all of us. Jesus had the power to keep His suffering from happening. If we could have looked ahead to that day in January, and had the power to stop it we would have. I would have. Christ saw much worse to be inflicted upon Him, and he let it happen, but for the joy set before Him. We look forward to the day when every tear is wiped away. Come Lord Jesus. Come.
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