Off The Grid

Living off the Grid on a west coast island

March 27 Recovery plan

March 27th

Weight 84 kg ( 185) Blood sugar 5.8

He had a terrible sleep so I think they will change his sleeping pill to override the prednizone which plays games with your mind at night while you are trying to sleep. Dr. Kerr is in charge of transplant this week so he will be doing rounds but I suspect Andy will be in soon also.

The schools are on strike today. The kids will be thrilled. Jeanie hasn’t been at school for a long time with her kidney infection before spring break.

They have just taken E for chest x-ray and scheduled him for his first heart biopsy on Thursday. At least his first on his new heart. He had many on his old heart (weird to say that..). The heart biopsy is when they go in through a vein in his neck down to the heart and pinch a piece of it off to test.. This is how they originally diagnosed the giant cell. Now they will use this procedure to test for rejection and also for reoccurrence of the giant cell in the new heart. There is a 25% chance of reoccurrence, I think.

They have mapped out his recovery plan on the giant whiteboard on the wall of his bedroom:
■Activity: walk around 5A/B minimum 4 times ; daily exercise class; rest period from 1 – 230pm
■Nutrition: 3 meals per day; fluid restriction 1200 ml; record in/out
■Medication: Pharmacist will instruct
■Biopsy: Thursday
■D/C Date: Approx 10 days post transplant; day passes available
■D/C Equipment; scale (bring to hospital to calibrate); BP cuff; thermometer

11 Am

E has had a myriad of pills and isn’t exactly peppy. He dozed off for an hour but they woke him to take him for an echo. I thought I would take a moment to run over for my sushi so I wouldn’t have to leave him alone. But they weren’t open yet.:(

The plan is that Papa will come around 3 and take me home before rush hour. Brian will arrive around then and stay with E til 8PM He doesn’t like to be alone. Even though there isn’t much conversation he likes to have the company in the room. I really need to spend some time with the kids. I don’t know what I will do about tomorrow. ODAATT (One day at a time thing).I have to get Jeanie over to the Dr’s for a blood test to make sure her kidneys are okay.

When E woke up for his echo he had a headache so they gave him regular Tylenol. The Doctor hasn’t been to see him yet. He does however still have a crackle in his lungs. I guess the chest x ray and echo will show if there is anything to be concerned about. The hematologists just came by to say that his blood was showing good signs of rebuilding itself. E walked around the floor 4 times today and went to a 1/2 hour exercise class. Maggie and Mom were in to see him this afternoon.

The transplant team Nurse spent quite a bit of time with me with brochures etc. to read up and advised us that the new heart has CMV. So E is receiving extra medicine to combat that. He will have to have a medic alert bracelet when he leaves.

Brian and Papa arrived around 3. At 3:30 we left Brian in charge. Sandra was going to come after work. They will stay with him til 8PM. Fred came to visit and stayed an hour.  E phoned me twice before 10PM, he misses me and I don’t know how wise it has been for me to leave him. Perhaps I will take a couple of nights away and then stay again Thursday night after his biopsy.

Dr. Kerr was in and expressed his pleasure with E’s recovery so far. He thought tomorrow the telemetry set could be removed and E could wear a normal t shirt.

Janice delivered a big basket of goodies, cookies, champagne etc. the S.s sent Roses and Carol sent a basket of fruit. How she found out in Wichita Kansas, I don’t know. I phoned Alison and Spencer told them that we got the heart last week.

Papa , Jeanie, Scott and I are here watching tv and having a quiet night. It looks like there will be a strike again tomorrow at the school. I just spoke with Kathy, she was saying that they were thinking of going to Sun Peaks next summer in August and were thinking of asking Jack if he would like to come. I spoke with Sharon. and she is going to have Jeanie over to play tomorrow.

Janet is going to sit with E tomorrow night and Nancy on Wednesday.

 

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