Good weekend!

HI everyone - I just spent Friday, Sat and Sun with Dustin and things seem to be getting a little more progressive. The VA does not tend to push much while if Dustin were in a insurance related hospital, they would push him right out the door with little notice of daily changing issues.So VA holds back in no hurry and insurance is like "get him out of here". Not sure the choices are good but the doctor at the VA will listen and respond. They are changing antibiotics again and after doing another bronchoscopy they are getting more aggressive with his lung issues, meaning more asthma type drugs to open up the airwaves etc. He is doing great with his breathing, sitting up for about 45 min at a time and doing some new exercises while sitting up.HI exercises, like holding his head up while sitting up, tire him out. He reminds me of a newborn who has this head with no neck muscles to support it.

He had an incident whereby a respiratory therapist came in at 3pm and apparently was not a happy camper and was a little too rough with Dustin and his roommate. Dustin described it as "he stabbed me in the throat with a needle and put something like battery acid down my throut. In reality, they did a suction with a tube down his trach and probalby did some kind of nebulizer treatment. He complained of a horrible sore throat all weekend and was a bit paranoid that this therapist would show up again. Apparently his roommate, a very old black gentleman who has not been able to talk until the last few days wanted to file a police report as I guess he was rough with him too. Dustin had complained to the nurse and anyway the next morning I guess the VA police came and did a report.

In asking about this to the social worker, she responded that sometimes patients get bored etc and come up with some fun. I understand this totally but think it is unlikely that neither one of them can talk! Oh well, we got a representative of the Paralyzed Vets of America to look into it. She came today to help Dustin with the benefits he is entitled to. She is awesome and an great advocate. She could not believe that Dustin did not have a TV that he can change channels with with his mouth. She was going to get right on that as apparently there is a site visit very soon. She is certainly the one to know!!

Dustin's health is about the same - still on the vent although no respiratory issues have come up, his skin is very healthy and the bedsore he had started on his coccyx bone is all healed, no fevers, left lung still mucousy but seems to be getting better, and some movement in his wrists and upper arms. One weird thing is that his good arm (right one) begin to not have much movement as of Friday and he seems to have a large "bump" around his bicep. they are going to do a MRI to see if his bicep much is torn or has slipped out of the sheath. HOever, on Sat, I sat in the bed with Dustin and we read a "People" magazine. He was able with my help to flip the pages. I would hold the page separate and he would get his right arm under it and push the page over. He was exciting for him but you need a lot of patience to keep trying as it take several trys.

He remains on a fecal management system and a catheter because of diarrhea- most likely due to all of the antibiotics and the tube feeding. It is hope that once he starts solid food they will get him on what is called a bowel/bladder program and the bags will go.

He is very busy at bedside during the week getting PT, OT and respiratory care. His memory is pretty good but short term is still up and down.

Please keep praying for his strength, and mental stamina to be at optimum levels as well as the other issues that continue. It was a good visit and my stay at the Comfort HOuse was good. It is closer to the riverwalk for good walks in the morning.

While in the big city of Augusta, I went to Walmart to get a CD player for Dustin as well as audio books. He seemed to enjoy listening to it so far. I also went to the mall which is probably my least favorite thing to do in the whole wide world. I needed to get something at one store and then ate dinner in the food court - yuck!! I observed mostly a lot of teenagers walking around staring at their cell phones. Pray that our teens will not lose all socialization skills!

I appreciate any research or anything else that you may come across to help in Dustin's recovery. I plan to get an order for Dustin to have his teeth brushed 3 times per day per one of the posts/comments based on research.They found that this reduced vent related pneumonia. It seems when I asked about his tooth brushing schedule, they were all puzzled. HIs doctor, an 83 year old pediatrician, twice retired will be open to this suggestion. I really like him as he will listen to whatever y ou have for him. He is over the pride and arrogance of many doctors who don't want to hear what you might think. Humility is a great hing in my book. In Proverbs , it says "humility comes before honour".

I appreciate you all.

mary pat