Quiet 3 days

HI everyone - I got back from seeing Dustin yesterday after arriving there on Sat around 6pm. We had a good time "talking"and going through different things I gather through the week (cards etc.) I got him a new CD player with a radio as he has been listening to a 11 hour audio book which he enjoys. TV gets old quick, especially when you are "in the industry". Instead of enjoying (if that is possible)the show, he critiques it. He did however, finally get a "sip and puff" TV that he can operate himself by blowing in a tube that turns it on and off and changes the channel. After he got that it seemed like he lost interest. I don't think he watched TV one time while I was there for 3 days. He would listen to his book when I would leave at night or if I had to run to the mall for a minute (one of my least favorite activities).

He is doing about the same except when they sat him up in the side of the bed, he is able to hold his head up much better whereas before his head would flop over like a newborn due to lack of neck muscles. His arms are getting stronger and his bicep did not end up needing the MRI as it seemed to go back into place.

They continually do chest x-rays to check the status of his lungs. The left lung continues to fill up with fluid despite different antibiotics. He had a consult with the pulmonologist who said that because of nerve damage in his lung and diaphragm that the progress would be slow. Apparently he had a similar patient that took 6 months before they were able to begin weaning him off the ventilator.

Dustin seemed to be a little distant this weekend losing his normal "spark" that he has. Once we would start talking and get involved in something he would be fine. He says he is really tired of hospitals and people always "doing" stuff to him. I understand that it has been a long almost 3 months in the hospital but the company is good for him and stimulates his brain and gets the focus off things the enemy would like to tempt him with.

His doctor did get the order to have his teeth brushed 3 times a day based on the research that shows that there is less vent related pneumonia and infections with good mouth care. I brushed away yesterday playing the dental hygienist role, flossing and suctioning as well as manicure, pedicure, shaving and slathering lotion all over him. God has been so good to let me so enjoy taking care of him. Most of you that know me know that on my own , I would not last 1 hour in the hospital. With God I am there 11-8pm and having a great time interacting with Dustin, the nurses, doctor and different disciplines (OT,PT and speech). I actually even met the dietitian after the nurse insisted that we meet. I had told her I was an RD but only have enough information to be dangerous as far as the tube feedings etc.

I also did training for bathing and tube feeding as when Dustin prepares to come home, we have to live in an apt for 3 days on the floor and take care of all of his needs. I figured I might as well start learning now and the wonderful nurse was willing to teach me and let me help.I have also asked the doctor about using a "pesamere" which is the thing that plugs up the trach so he can talk. they have been reluctant to do it as it turns off the alarm. I asked that if I was sitting there could we use it knowing that I know enough about the respiratory settings etc to know if I needed to call a nurse. Dustin has also gotten to be quite the expert on his health care and needs and is quick to tell the nurses when they aren't doing it right.

HI dad and his wife will be going to Augusta this weekend from Virginia and then Rick, dogs and I will go on Dec 24-26 when Nerina and here family will come from Marco Island Florida until Dec. 31. Nerina has completed her fall semester of her fourth year at Univ of FL. I believe she has one more year in her major which is some kind of media engineering. She is a very bright girl and we are very proud of her. Rick and I will return on Jan 2 or so as we will be helping clean up at work the campground, sanctuary etc after our 2 big weeks of ministry and teaching. This week we have about 350 people who came to our free week of program. It is really exciting to be able to teach and see there hunger for God, freedom and healing. I taught on bitterness today and after the ministry you would think you were at a football game with a winning touchdown.

We continue to focus on the future and also remember our older son, Forrest on his would have been 26th birthday on Dec. 26. He is greatly missed as there was no one like him in his uniqueness.

Rick and I wish everyone peace filled days ahead as we celebrate this very special season.

Blessings to all,

mary pat