Billy Is Still Coming Back!!!!!!!

September 6, 2006 at 11:39 pm

Hello Again Dear Family!

September 5th: Since I updated you last, there have been some changes. This past week has been busy with trying to wean Billy off the ventilator. There was very little success in this. His stats keep going down. But, he is doing well on the C-pap setting. Billy did not realize just how sick his lungs have been until 2 days ago. Now he understands why this weaning process is going to take time. We keep telling him that baby steps make big steps.
Doctor D is working carefully to find the right dosage of neurotin for Billys pain level, which has increased especially now that the nerves are begining to wake up. Many different sensations are coming back and the muscles are wanting to work. Doctor D has explained to Billy that his nerves have been clipped in sections like that of an electrical cord and that now they are being mended like wrapping electrical tape around that cord. Billy understood this.
P. T. and O. T. is coming along. Billy’s arms, hands, and fingers are moving more each day. His legs and feet are going to take a little more time. Doctor D explained that since his feet and legs were the first to get the bunt of this monster, it will take longer for them to recoop. But, just to give it time. Billy especially gets frustrated at this because the boots limit his mobility to try and move them hisself. So in the course of the day, if he feels like it, I remove the boots and work with him so he can practice a little bit.
Billy has also been taken out of MINU, Medical Intensive Nursing Unit, and placed in PCU, Progressive Care Unit. This is a step down from Intensive Care, eliminating the heart monitor and restricted visitation.
Billy doesn’t care for it much because it is in a corner where he hears noises but can’t see anything that is going on. He also feels like he is being ignored because the nurses do not respond as quickly as they did in MINU. This causes him to loose sleep at night. And when he does sleep during the day he has nightmares. He says they don’t make any since.
And even though this is a step towards recovery some of the nurses are as bad as the ones he had before. I have never seen nurses so hell bent and bound not wanting to give a patient a bath.
And one got to deal with me today when she overdosed Billy with pain medication, to the point he couldn’t even stay awake to do his P.T. and did not remember doing his O. T.. Then I couldn’t wake him up at all. Even smacking him on the sides of the face didn’t work. Finally I told him I was going home and that got his attention. I explained to him that he needed to stay awake because the nurse had given him to much medication. Then I went to the nurses station and confronted her in front of god and everybody and told her to get help because she was going to give him a bath to keep him moving and awake. Needless to say the job got done and Billy stayed awake through it and I stood there and watched to make sure it was done right. Then I spent the rest of the day practicing his movements and talking to him to give him a chance to work some of this off. He was somewhat alert when I left this evening.
I just spoke with his nurse. She said that she has been in his room and they have talked about how much medication, at one time, he should be given. He is resting now so that is a good thing. And he senses her when she comes into the room to check on him. So that is also a good thing. Today, he responded to no one coming into the room.

Emotions: Anger is a mild word for how I feel about what has happend. First this Monster that attacks from out of no where and then to have the medical profession to let you down in so many ways.
We have all mostly grown up with Doctors and Nurses who actually cared about people who are suffering from illnesses. Especially those who are left helpless to the point that they can’t even communicate. Those Doctors and Nurses are a rare find now adays.
Sadness comes when someone you love and care about so much is suffering and there is nothing you can do to help. And the times when you look at them and you see the inner child come out.
A sign of HOPE? You bet! With the first finger movement I knew that Billy was coming back. I had it in my mind that I would not see him leave the hospital in a body bag. Especially at the time when I did not know what we were dealing with. And I even told God that he had a fight on his hands.
This family has a motto, “We are Gurrs and we never give up. We fight Back!”
When I saw that finger movement I knew Billy had not given up. That he was fighting back. And still is, even though there is frustration of things not moving at the pace he wants it to.
Yes, there is a lot of emotion with any type of illness. It’s just that I can share my feelings and emotions with you all and you understand because you have all been there. That has been the one thing that has kept me going is actually knowing that someone understands.
Well family, it is time for me to get some rest. Tomarrow is a new day and it comes very early.
Thankyou for caring and keeping us in your prayers.
GOD BLESS YOU ALL! …………….Piper