April 8, 2018

The difference a week makes, can be a wondrous adventure.  Daniel started eating some real food this week and he has been in less pain.  He is very content and basically very happy.  

Friends can change your life.  Daniel has several friends he has known for years.  Owen and Cory paid a visit to watch a very dumb movie with Daniel. The laughter and the comments coming from the bedroom made everyone's heart grow so large, it was contagious.  Daniel has been pretty happy ever since.  Owen's dad, Tom stopped by too.  Tom has been a big part of Daniel's younger life and provided so much support to us while Daniel and I were living together.  It was a flashback to the "good old days" and love was surrounding Daniel in every direction.  

Thursday night, was interesting, the power went out in Daniel's area of Missoula.  I have tried to provide all the back up supplies necessary for the nurses to be able to take care of Daniel.  We really need a generator in the apartment building but of course the company thinks it is way too expensive to provide.  I wonder if they would think that way if their beds lost power and flatten down to rest on the springs of the bed and there was no rotation system in place and they had no idea when power would be returned.  The lessons I would love to teach people who fight against funds for the handicapped people in America have my ire big time.  

Thankfully, when we purchased Daniel's new bed, I made sure he had a back up battery on it for times like this.  I have provided a multitude of flashlights, a big lantern, and a cap that has lights in it so you can give meds hands free.  

Well, our night time nurse truly freaked out when the power went out.  He couldn't find any of the flashlights, the lantern or the cap.  The battery operated suction machine had not been charged, the batteries for Daniel's ventilator had not been charged, the battery in his machine was charged so that was good.  Then we had a major problem with the oxygen.  It usually has a valve on the front so you can hook up the oxygen tubing to the big tank of liquid oxygen and you're good to go.  Of course, the valve had been removed, have no idea why.  Then the nurse didn't know how to fill the portable oxygen tanks.  Daniel was texting me, he was also texting another nurse.  The nurse on duty would not slow down to listen and would not stop to listen /read Daniel's lips as to what to do.  Daniel was using his text to speech, he was trying everything he knew to tell the nurse what to do.  Please remember he is doing this with 2 fingers that he can move, if the pad he uses as a mouse slips, he can't move it back in place.  He is so amazing, I mean truly amazing!

Now that it's over and all are safe, I want to make it clear I am not putting down the nurse on duty.  It's intense taking care of Daniel and when things like this occur, you lose your mind.  Common sense goes out the door, and you're so scared he's going to die if you don't get everything done quickly you simply forget your name.   Some people/nurses are much better in critical situations than others.  I have begged not to be his nurse because this would be me, running around not able to remember anything.  I'm not a trained nurse, I just play one at Eagle Watch. (There were some residents at Eagle Watch that I have known for years, about 2 or 3 years ago, they stopped me and asked, "Is it true that you are Daniel's mom?" When I confirmed, they started laughing so hard, and told me they thought I was a nurse and tried to be on good behavior around me!  Now I get to hear the dirty jokes too.  I love the residents at Eagle Watch, they have their own community and support one another.)

So things are great right now.  I even got a text from another long time friend, Molly.  We had just been talking about her to a nurse.  Daniel wanted to tell Molly stories.  Those two, I swear have either been brother and sister before, or husband and wife.  They would misbehave (we're talking 3-4 year olds) and we would put one in time-out, the other one would beg to get the time-out kid free.  Molly's mom and I talked our heads off about how to be kind to your friends, blah, blah, blah.  As soon as the time-out was over they would go right back to arguing or whatever they were doing.  It just was their way of communicating.  Daniel explained they had planned to buy a laundromat and would sell doughnuts while the people waited for their clothes to wash and dry.  Pretty creative kids!  Molly will be visiting this week.  

Friendship, nothing is better in life, to know you are loved and people do care about you.  Daniel says he feels love all around him.  It doesn't matter if you are there in person or I tell him Justin sends his love, Aunt Martha is thinking of you and sending her love, he feels it and gets it.  

Love is truly all there is and I send you all of my love.