Tuesday, June 28, 2011


that I haven't been here to post in so long.
BUT 1st I'd like to thank all of you wonderful people who have posted here or sent emails. Your VERY kind words and prayers have warmed my heart and meant so much to me,THANK YOU.
Everyday since May 28th when John left here by ambulance something not good has happened. Lots of minor things and somedays way huge major things. I can't possibly type all that's happened,so I'm going to try to condense it into the most major things that have happened in the past week.
A week ago this past Monday I got a call from a hospital Social Worker in the afternoon telling me that they were sending John to a Nursing home that evening.I was pretty shocked about it because NO Dr. had called me and it's not usually normal to take someone straight from ICU to rehab before spending some time on a regular med/surg floor of the hospital.I'm well aware though of what was going on. Since John had been in ICU for so long,I'm sure that the insurance co. was telling the hospital to move him on. I know this for a fact because they did it to me once too.It was becoming just too expensive to keep him in ICU.Never mind the fact that he was too sick,that he can't stand or even sit up and that they had been using a crane lift to put him in a chair for a little bit at a time.Not to even mention that the pneumonia he went in with originally is still there.None the less they were going to "Turf" (a term I learned on the old TV show,ER)him out.John and I were kinda happy though,cause the nursing home is across the road from our house.Even though it's across a pretty busy 2 lane state route,I figured I could make it across in my electric wheelchair,so that I could visit him more often.Unfortunately my kids will seldom take me up to see him.
He arrived at the nursing home Monday evening about 7:30.Tuesday evening I was gonna try to make it across to see him but my neighbor said don't try it because it's too stifling hot out for you.She told me she'd walk me up to get across Wednesday afternoon.My daughter said she'd take me after work.Well I never got to try my daring trip nor did Mary Jo get to take me,because Wednesday the nursing home almost killed John. I got a call from them telling me that John was in respitory distress basically asking me if I wanted them to call an ambulance DUH!!!!!!!
As his family stood around his bed in the ER,we thought we were watching him die.The Dr. was a breath away from putting him back on a ventilator. Everybody in the ER KNEW that the little lady sittin' in the hospital wheelchair,tremoring from head to toe (darn MS) was FURIOUS to put it midly. I asked for a Priest and it seems that one appeared within a minute to give him last rites. The nursing home had left his Co2 level get to 100. Normal is 30-40.His own body was poisoning him to death. Well he made it with out having to be put on the ventilator,for right now,and was put right back in ICU,where he NEVER should have left. This caused him to take 3 steps backwards in his recovery. Now there's a 2nd new pneumonia in his upper left lung and the original one is still in his lower right lung.He's also receiving constant blood trans fusions now.
This past Friday nite I sat and hooked till late and thought.Saturday morning I got up before up before 6:30 a.m. and my decision was made.For the 1st time since he left I was at peace and could pray again. I'm bringing him home!!!! He deserves this and by noon yesterday I had completed everything I needed to do to make that possible. A friend that I went to school with works for New Life Hospice,so I called her.Our Dr. told me Saturday when I told him my decision that he was just concerned that they wouldn't help because John's a code. I told my friend that and she knows that I'm seriously ill too,but she called me back in less than 10 minutes and said that they're giving me EVERYTHING that I need or want and she was the 2nd person that day to volunteer to help me on her own time. I just wish my kids would be as supportive to me,but they've just given me a lot of heartache these past few days.
I won't tell you that I'm not scared to death to do this,because I'd be lying,but John is so happy about coming home,that after being off the week-end she couldn't believe the change in him!!!! I told him that his job is to do his best so that I can get him home. He ate a FULL plate of food yesterday for the 1st time in I don't know how long,because he's been on tube feedings. But now they're taking that star wars O2 mask off of him which is called a B-Pap which he'll be on the rest of his life for short periods of time which then allows him to eat and talk.

I also furiously worked on the big rug that he's seen me work on for so long,so that he could see it. I took pictures to show him but my son thought that we should take the rug to show him. When we got there he was on the B-pap so we have to try to read his lips of what he's trying to say. He mouthed Oh how beautiful and then started patting his chest and saying mine mine. I laughed and said,then write me a check LOL!!!!
As you can see it still needs to be steamed and bound which is going to be a VERY big job for me,but I'll get 'er done!!!!

I'd also like to publicly thank Lori Rippey,Lori Brechlin and Marte Bordeaux for being their NEVER ending support and for being proud of me for the decision I've made to bring John home for whatever time he has left. They are my family and I love them.

Friday, June 3, 2011


I'm finding it hard to type cause I'm a 1 finger typer and the MS has kicked up causing my hands to tremor,but I'll manage. I felt the need to update because of the very kind comments here and emails about my last post.
I got up today at 6:15 and thought,why are you getting up so early,but less than 10 minutes later the hospital called. John took a turn for the worse and they told me that he had to be put on a ventilator.
Yesterday morning the hospital called our son Mike and told him that he needed to bring me up to the hospital. So he told me that Mary Jo and him were coming to get me at noon. My friend Marlene had also come to do some work here,unpacking and organizing.
When I got to his room the oxygen mask that they had on him looked like something from Star Wars. His nurse was with him and when Mary Jo wheeled me in,she said there's what you wanted!!!
I felt so good that I was able to tell him that I got the other house emptied (well mostly Ron did). I said,we're DONE with that place!!! He manged to say,really? and he started to cry. I knew it would make him happy and releived.
3 of our grandsons and their Dad and Mike's wife came in too.But all the beepers kept going off,so the nurse came and said that there were too many people and he was getting too excited. When John and I were alone he told me that if he had to be put on a ventilator he wanted to do it because he wants to live and come home,but that if he had to come back to the contraption that he had on,he wanted to die.
When I called the hospital last nite,his nurse told me that he was doing good and that there was some improvement.I guess through the nite he took a turn and the Dr. said he had to be put on the ventilator. Our Dr. had called me the other day to check on me and see if I felt like he did about trying to bring him back by putting him on the ventilor and giving his lungs a chance to rest and then after a few days the family would have to make a decision.
I'm going to be 64 and I've been with John since I was 16. Yesterday may have been my last time to talk to him. I feel so lost. It's all in God's hands now