Off The Grid

Living off the Grid on a west coast island

March 20 Yes we are still waiting

Well I left at 7:30 last night and went to Lisa’s. Becci arrived for coffee and Deanne too. Unfortunately I had a couple of glasses of wine as we sat around the table.. The first wine I have had since this all began in July. It made me instantly sick.. Becci drove me home, Lisa followed and man was I nauseous. We got home around 10:30 with the kids.. I ate some dry toast and felt much better.. I definitely needed some food in my stomach… I didn’t need the wine.. but when I sat down at Lisa’s I just felt overwhelmed for a minute…

I didn’t sleep at all. I finally took some Tylenol at 4am and then went to sleep. E called at 7:50 am. He likes me to be there when he wakes up.. They still don’t have a bed on CCU for him. So he will probably go home tomorrow. They have increased his Lasix and Altace so they are keeping him another day to see about his reaction to the medication and fluid retention. But without the dobutamine we will probably have to come back in a couple of days to try again. But I guess we will just have to see.. It is the old one day at a time again….

I phoned Nancy to let her know what is going on. I asked her to explain it to their Mother.

Gareth’s Dad took a turn for the worse last night so Lisa has gone in with his brother to run some errands for their Mom. Scott is with Dylan, J is with Jessie and Jack is with Ean.

I got a parking spot in the Wall Centre so I don’t have to keep running out every two hours to put money in the meter. They give me a heart transplant patient negotiated rate of $6.00.

There wasn’t really anything in the mail today. Just a magazine. No emails either . But I sent one to Hutch, Mary, Syd and Lynne S. last night to let them know what is going on.

Fred was going to try to come and visit for a little while today as well as Deanne and Leroy. I told them E is bored with my company and a little visit would break the monotony of his day. I can be pretty boring. But their visits depended on Fred’s work and Leroy’s hockey commitments.

This will be E’s 35th night in the hospital. Friday he will have had his beeper and been on the transplant list for four months.

For E’s medications the changes are Altace is now 20 mg per day and that is it. I thought more had changed but that is it.

E’s nurse the other night was telling him that she knew all about him. She said last summer at the end of July she was student at VGH and they had a seminar about giant cell myocarditis. They gave E’s case history as the example. What a celebrity we have !

Mom called here so I gave her the run down as to where everyone was….

Lisa picked me up last night at 7:30. So I was home by 8. The kids were fine and had made out well during the day. Nona had made them spaghetti and meatballs for dinner.

I had zero sleep without E there… I tossed and turned all night.

E slept well though. He took a sleeping pill and had a good night. They brought a new patient to the room at midnight. They took three pounds of fluid yesterday off with the IV Lasix. So he was really congested. It has made a huge difference for him. He feels a lot better. Yet he is incredibly bored.

Gareth just came in on his way home from work. I had dropped the kids off with Lisa this morning and they were going to go bowling at the zone this afternoon. They are staying there for dinner also. I will pick them up on my way home.

I spoke with Dr. Kerr this afternoon but he said that it is Dr. Hailborn in charge of service now. But he said there still aren’t any rooms available down at CCU. But E’s nurse suggested getting a day pass or asking for one from the Doctor. That way, E doesn’t give up his bed, so is still in line for CCU but is able to go home and see the kids. That is certainly one suggestion that might work as he is bored stiff and feels it is a waste of time waiting here. But I honestly think it is the safest for him and fastest way to a new heart. Stay Here !!!

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