Mikie had a pretty good night.  We are learning to manage this thing better and better every day.  We have been getting up usually at least twice a night, and Saturday night past I was up about every 20 minutes, which doesn’t mean I was down very much.  And except for Saturday night, we haven’t had to do much to slow him down.  We’ve found that Lopressor seems to be the most effective drug we have to bring him down and we were giving it to him twice a day at 8 AM and 8 PM, but now see that we shouldn’t give it to him unless he needs it.  Lopressor is used for high blood pressure and to slow the heart.  Mikie’s blood pressure is usually right where it should be.  I see no harm in using Lopressor only when needed, but will of course run it by the doc.  

Mikie also takes Klonopin for seizures but it is also used for panic disorder.  We have given him an extra dose when he is flying and it brings him down, but right now the Lopressor seems more effective.  

We’ve changed the way we give Mikie his meds (again).  We give them to him now each one separately from the other with at least 60 ml of water between each dose.  I want to talk to a pharmacist and ask if there is any chance that by mixing them all in a cup and letting it sit for several hours or more might cause a change in any of them.  I know that this is about what happens when you swallow many medications and they end up sitting in your stomach, and I know that we are warned to check with your doctor and/or pharmacist before taking certain medications with others, but I think a safe practice to develop would be to take them separately if possible.  In Mikie’s case it goes directly to the small intestine and doesn’t have a chance to sit in the stomach.  Because of this we usually see immediate results when we give him his meds.  I happen to think that doing it this way is making a difference.

Home Health came out Monday and checked his PT/INR levels again.  They were low but we didn’t get the actual numbers.  They called and told us to start him back on the Warfarin and give him 5 mg a day.  Lorraine told her that we have 7.5 mg tablets and asked her how we do that.  She told Lorraine to get a new prescription. J  I told Lorraine we would just give him a half a pill, which is 3.75 mg and that’s probably close enough.  Better yet, we could give him an aspirin a day and probably accomplish the same thing.  I think that Mikie’s body is no longer making the necessary adjustments and wonder if that is a sign of liver or kidney damage.  We give Mikie two different kinds of food, one is called Peritive and it is loaded with calories and all the necessary vitamins but it is very rich and I believe part of the cause of Mikie’s gut cramps (which sets off the AD).  So we dilute it with a little water and even started adding a can of the Carnation breakfast drink that he used to get.  The Carnation is commonly used for tube feeding but it is lacking just a bit in the area of Vitamin K, and the Peritive makes up for it.  Vitamin K is what your body uses to strengthen the bloods ability to clot.  I wondered if Mikie was getting too much when he was on straight Perative so I started balancing it with the Carnation.  It seemed to make a difference as suddenly his PT levels went the other way.  (The blood got ‘thinner’.)  It could have also been that Mikie just reacts slower to changes in medication and finally all the Lovenox and Warfarin we were giving him finally got to him, as well as we had given him several doses of Tylenol to help aid his discomfort at times and bring him down in the middle of the night.  I knew that care must be used when giving Tylenol along with other blood thinners and we were only giving him a single dose once a day for several days, with the doc’s approval.  We also figured out where the huge bruise came from on Mikie’s arm.  It matches a blood pressure cuff almost exactly.  From now on we (and the HH nurses) will only take it on Mikie’s leg, especially while he is on blood thinners.

I’m wondering if we should back of the Colace (stool softener).  I just checked and one of the first things it says at drugs.com is not to take it if you have abdominal pain.  What were we thinking?  Just because the doctors at the hospital said to give him Colace, why wouldn’t I check it out?!  They never would agree with me that Mikie was having abdominal pain (because they were never in the room with him when he was squirming) and insisted that he was suffering from sepsis (which he was after he had been there so long).  We are going back to something Dr. Galan told us about, something called Benefiber.  It’s easy to use and we have some samples.  Mikie’s BM’s are still very loose anyway, but I don’t think he is still going like he should. I still suspect there might be a mass holding back and only the very liquid part is getting by.  I wish I could see inside him.  Maybe we’ll run him to the doc and get him to give him a quick feel and see what he thinks.

Something else we learned yesterday is that if we turn Mikie’s heart monitor off, the alarms must be reset.  We had it sitting in the hall and I woke up several times just to glance at it and his rate was good for most of the night, in the 80’s and 90’s.  I woke up at six this morning to a faster paced beep and looked and it was over 130 and no alarm!  I checked the settings and it was back to the default of 200!  I’ll have to put a sticker on it reminding us to check the alarm settings before going to bed.

Enough for now!  (Maybe too much.)