Mercy - fresh and new each day

Hi to all- it ha sbeen awhile since I posted as I don't like to post information that only fills a page. I talk to Dustin about 3- times a week but it is usually a limited conversation. His memory seems poor but I have decided much of it I would not bother to remember either. Day after day, the same therapies, the same pain, the fever that comes and goes - well I don't think it is brain trauma just boredom trauma!

I made it to my second family meeting. I was a bit tired and for whatever reason a little weepy when I entered into an overwhelmng room of about 20 professionals. They begin to ask Dustin questions like "what do you want to do for self care in the next 2 weeks or what are your medical concerns. NOw don't get me wrong but those questions to someone on massive meds and who has been doing the same thing for 10 months.....well what answer would YOU have?!?!?

The meeting was whatver but a few concerns I had were his decreased cognition, and memory (he asked me when he got a new roommate - that he hadn't ever had one before . He has had the same one for about 4 months) I also questioned a CAT scan he had about 3 weeks ago and they stil are not sure of the results. They said something to the effect that he might have an anuerysm in his brain that is causing pain and cognitive problems and you would have do to an angiogram to find out. Are you kdding me....that's it???? And..........when where you maybe thinking about following through with this? I mean it sounds more serious than "what's for dinner right?" I was told he would have to have it at Tampa General and it would be outpatient. OK I thought I got it but then I questioned them about "ourpatient" and they told me when he goes home/discharged that he could get it. I think I must have been in shock when they said this. I mean do I have stupid written all over my face? Oh well I will take that a little further tomorrow.

Dustin has also been refusing respiratory treatment and then cussing at them to leave him alone. As a result, his lung function gets diminished, his oxygen that keeps your brain functioning well, and circulation to the wound gets diminished. I know in the past the treatments were very apinful and traumatic to him but I also know he wanted off the vent and dealt with it. When I questioned him about it and explained the utmost importance of doing the treatments he was totally shocked at what I was telling him. In his mind, he did not remember any of it except for one incidence when he blacked out during the treatment and then came out of it cussing. I tell you God certainly has His hand on Dustin!
Oh well, after the meeting, Dustin seemed to really perk up. We went to PT where he rode a little statiionary bike for 30 minutes (foot pedals for you) to keep range of motion up and the calicification around the joints down. mAfter that it was off to Starbucks, a new feature of the VA!! I havce always thought caffeine to be a good thing especially if you feel a little down and groggy. Well, a Carmalito doubvle expresso seemed to be just what was needed. WE came back, ate lunch outside and then went to OT. Here he is practicing arm feeding movements with these arm sling things that are pretty cool. He maintained strength,. proper blood pressure and a great attitude through it all. Now that is a miracle from lately. By this time he had been up 7 hours (he has a 2-3 hour sitting limit) and doing great the whole time with now breakthrough pain or anything. He was positive with me the whole time and I am soooooooooooo grateful for the great day.

We got back to the room and he wa certainly tired out. He slept a bit and I went to Walmart, and the health food store. When I got back I got to spend some great time with Dustin's most awesome caretaker. We discussed the plan for training, and discharge for Dustin's tentative date of Sept 28. We are all trusting God to work out the infinite details while we take our peace.


I came back and Dustin chowed down on Chinese food and a few chococate Ensure's. We had had a lunch outside of tuna salad on Rosemary Garlic Triscuits, a ton of grapes, ice cream and the infamous Ensure to wash it all down. Oh yeah, he also had a few bites of our sausage from our neighbor's pig. I left him at 9pm hooked up to his favorite audio book. I think we will all sleep well tonght. I am believing we are over the hump and going towards the home stretch.

thanks to all for your continual prayers and interest in our family testimony.

love to all
mary pat