How is Ramsy?

Hi again everyone,

Time for a little update.  Ramsy has been home for a week and a half now, and we are so happy to have him here.  I love to see the kids poke their heads in the door and say good morning to him, or ruffle his hair, or joke with him.  The other night he was too tired to come to supper in the wheelchair, so we all ate in our bedroom while watching a Muppet Show episode, and our son perched beside his dad and periodically peered through the bed rails to check on him.  I feel much more relaxed having Ramsy here with me all day, and not having to choose between home/kids and hospital/husband.

We are adjusting to the flexi-schedule of the home care visits.  I think I have counted nine different ladies who come to our house as the week cycles through, and although we have been given a general time category for their visits (mid-morning, lunch-ish and supper-ish) the exact time varies within about an hour and a half from day to day.  I am very grateful for their help with the physical care, and also for the help of the person we have hired to come each evening to get Ramsy ready for bed.

Today we had a visit from the traveling palliative care nurse, who came to take blood samples for testing.  Ramsy has been having many petit-mal seizures over the last week (these simply cause his eyes to roll up or to jiggle back and forth rapidly), which is new.  He has lost quite a bit of weight over the last three weeks, and it may be that his anti-seizure med dose is too high, which can actually cause seizures and other problems.  In addition, he has just not been himself over the last couple of days.  He's been extremely sleepy, only awake for maybe an hour and a half total each day, and very lethargic when awake.  He still knows what's going on around him, though- that is very clear from his facial expressions, and tonight when I put my face close to his while saying good-night, he puckered his lips to kiss me.  It makes me happy and breaks my heart at the same time.

Anyway, when the nurse was here she figured that he may have a lung infection (I forgot to say that he also has a bit of a cough, fever, and trouble swallowing), and she asked the palliative care doctor to come see us tomorrow to check out what medication Ramsy may need.  I so hope that he will perk up after a few days of antibiotics or whatever is prescribed!  No comas yet, please.

So that's where we're at for the moment.  Visitors are still welcome for short periods of time (usually 10 minutes), although I need to be careful not to over-schedule him.  I just ask that you give us a call first, and also that if you feel any hint of cold or flu, you would save your visit for later.