Next Jon Update, 1/8/11

First, do you like the design of the blog?  I thought it was about time to change it up, and since Jon is sleeping most of the time I am here with him, I had some time to play around with it.  Personally, I think it looks really good, but please let me know what you think!

OK, so back to Jon, no outstanding changes yesterday.  The doctor came in and talked to us, told us that he would be given an IV with caffeine in it to see if that would help.  That was finally given to him last night, but it didn't help with the headache at all.  Either is the fioricet they have been giving him.  He was having trouble swallowing the ibuprofen pills (800 mg), so they switched to a liquid for him.  At least that's a plus, making it easier on Jon and his myotonia.  He only threw up twice yesterday, which is an improvement I guess, but not throwing up at all is our goal.

Jon was supposed to have two friends visit him last night, but they never showed.  I felt really bad, since I was there either.  I wish he would have told me, because I would have come back to hospital to stay with him.

As usual, I couldn't sleep very well, so I got up at 5am and started getting ready to go to hospital to see Jon.  I decided to dress nicely to lift Jon's spirits (he always loves a his wife in a dress and boots:D), and then packed the Christmas gifts for Vickie and Norman.  They, as well as Grandma and Grandpa are headed down from Pennsylvania to see Jon today.  And Vickie and Norman haven't received their Christmas gifts from us, so I thought this would be a decent time, and something to do while we are all here at the hospital with Jon.  (We already mailed Grandma and Grandpa their gifts before Christmas.)

I got to the hospital just before 7:30am, and Jon had already gotten his shower, and was awake and happy to see me.

Soon after breakfast arrived, the doctor came in to talk to us.  He had spoken to the neurologist and the neurologist said that at this point it would be too late to try Imitrex (I had asked about this).  While he was here, I asked a bunch more questions?  Is there another pain medication we can try him on?  Are you going to start him on a prophylaxis as you mentioned a few days ago? Can you change the timing of his pain medication medication so he's not in so much pain?  He responded positively to my questions.  I suggested that they start him on toradol instead of ibuprofen, since it is an IV medication, often given for to patients with migraines, and he said OK.  I asked if they were going to start him on a prophylaxis to prevent any future or rebound migraines, he said yes, and asked what I currently take (which is topamax, and works wonderfully for me on many levels, I call it my miracle drug).  And he switched up the timing of his medications so he receives medication more often (but not more of it) to help control his pain. 

Perhaps this is some actual progress in treatment!  Maybe all it took was some real patient advocacy.  We'll see.  It's to 10:30am now, I'll post again later with some more updates.

Thanks again for all the well wishes, thoughts, and prayers.  All are much appreciated, and needed.

From Franklin Square Hospital, signing out...