Can't Sleep

The problem with falling asleep on the couch during the evening is that when bedtime comes around, I am not sleepy anymore. So, a post!

In my plan for the month of January, I had included deep cleaning, shopping, organizing and getting ready for my trip to North Dakota to play Grandma and to help my daughter.   Life has interrupted once again - so much for my plan.

We've taught some temple prep classes recently but have been unable to attend the temple with those students.  I'm sorry about that. I really had planned to go for David and for Billie but Neal isn't well enough to go and the fact is that I am not comfortable leaving him for the time it would take to drive to Bellevue, attend a session and return home. 

So - Plan B.  I've discovered that it isn't any fun to cook meals when Neal is unable to keep food down or when meal suggestions don't appeal to him.  My giant list of entree ideas hangs on the refrigerator but is ignored.  Tomorrow I'm going to make stew and perhaps Neal will try a little of it.

Neal was in the ER last Saturday night and they basically did nothing for him - took an Xray, ran a few tests, gave him some morphine for pain and sent him home with a referral to a specialist. We've been waiting all week for that appointment and holding out hope that there would be answers when we saw him today.  That's not quite how it went - medical history interview then blood tests and now we wait over the weekend to find out those results, to do more labs on Monday and to schedule a CT scan.  I suspect I need to cancel the appointment in Seattle next Wednesday with another doctor because Neal will probably be involved in testing at Valley. At least the specialists all know each other!

The good (?) news for the week is that the nighttime oxygen evaluation actually resulted in answers.  In order for Medicare to cover the cost of home oxygen, a person's saturation rate has to dip to 88% and stay there for five minutes.  The first night Neal couldn't tolerate the oximeter on his finger and gave up after 90 minutes.  The rep called the next morning and suggested he try again so we did.  The second night he had it on about an hour then knocked it off so I reset it, but then in his sleep Neal pulled it off and put it on the other hand.  Disconnecting it shuts it off so I had to restart it but then it slipped off again.  I moved it back to his left hand again and started it once more but after about 90 minutes he asked me to shut it off.  I really didn't think there would be enough data for an evaluation but I was wrong.  They called this morning and said Neal qualified: of the 4 hours total hours they had recorded he had dropped to the cutoff point and stayed there for thirty minutes, and at some point his numbers were in the 60's!  That was a big deal.  Authorization came through this afternoon and the equipment was delivered tonight.  The machine is quiet but I am aware of its rhythmic puff-puff and can't seem to accept it as white noise.  Maybe that's why I can't sleep.

A friend sent the URL for a caregiver website that had a test to determine stress levels.  I thought I would be off the chart with this situation but results showed my answers put me in the Moderate range.  Interesting.  I guess I can stop feeling sorry for myself. That doesn't mean I'm happy about the lack of support from family members but it does mean my coping skills are better than I thought.  Or that things could be worse. 

Here's what I'd like - some answers about Neal's current pain and weakness, some treatment to resolve the basic problems for him, and time to prepare for my trip.  I need to go to several stores, clean the house, get some repairs done and prep some meals for Neal and his sister.  I suppose I could quit hovering around Neal all day and work on some of that even if I can't leave the house.  It's a matter of reevaluating my list and being a little creative.  Looking further ahead I'd like to return from North Dakota and have Neal be healthy enough that the cardiologist will approve the next surgery right away,  As he says, Neal needs "the whole enchilada this time and not just the nachos."  In other words, the risky heart procedure of last June was a temporary fix which is no longer working and now it's time for the real deal of an aortic valve replacement.  But there isn't a surgeon who will do the AV replacement unless Neal is completely healthy - it's too risky if he isn't.