pain and suffering

Boy this sucks! finally out of the hospital as of yesterday. But now in a Hotel in Chicago downtown Chicago for another week. I have to see all the medical teams for followups at the end of the week and then the plan is to get back to Montana next Saturday. I feel OK but a few days ago they started the aggressive broad range antibiotics which is really uncomfortable and nasty. I am still pretty uncomfortable but there are a few hours a day that I feel reasonable. I am now administering the 4 antibiotics in the Hotel with the help of Sarah and the home nurse but as of Sunday I will be doing this myself, so Coach jay is now Nurse jay. It takes 6+ hrs a day to do this drug stuff so it pretty much sucks since I cannot be mobile. The worst part is that I have to do this for 6-8 weeks! Ouch! Sarah made a chart for me to keep all the drugs organized for when I need to take them. I could never remember it all without it. Each one has a different amount, frequency and dosage. Here is a list of all that is streaming through me.

Drugs

Vancomycin
Rifampin
Gentamycin
Cefepime
Norco
Motrin
Lopressor
Senekot

Then there is a variety of other orals that I take on demand

After getting out yesterday and checking into the Hotel, surprisingly was able to feel hungry and Sarah and I went downstairs to the Weber Grill and actually eat real food! It was the most pleasurable thing for a long while! Yeah! take it when you can get it I am saying. Then Sarah and I went for a walk around the Hotel, which is right by the magnificent Mile between State and Wabash. Unfortunately, I cannot drink any beer! but if I can eat I may gain weight or even get fat! since I am surrounded by great restaurants. The walk was great but a gradual hill up Michigan ave just about killed me-- a reminder of what is to come with my cardio rehab.-- NOT AGAIN! It is nice to see the vibe of the city even though my personal vibe is very low right now. But just today we walked down to NIKE town and my wife set me up with some new sneaks and outfit ! skateboard dude pretty rad-- did I tell you that mountain boarding may be my next sport? Shoes always make you feel better, right Carla?

I am still very confused, mad and frustrated on how I was this close to death when just a few weeks ago I was winning my age group in the Rev3 triathlon and doing 1/2 ironman bricks 4 days before I was forced to another open heart surgery. So many questions I still have in my head-- and no answers. But I am trying to put those behind me for now and concentrate on task at hand. staying positive and getting better.

Being in Bed all day sucks for sure but I am hoping to get out and walk in the city and go down to the lake this next week-- searching for those little comforts when I can. My mom is still here and has been helping with Cale. Chloe is on Cape Cod with Grandma. Little Cale was playing with me this morning as I was administering those drugs. She is a great baby and fills me with Joy. Sarah has been real busy arranging all the details, she will be heading to Boston on Monday to gather the kids. Sarah has been keeping me going and helps get me through each day she is the best. Before the taste of good food last night, I could only think positively about the fact that I was alive and the love of my family and friends.

So for the next week I will administer drugs, go for walks if I can, see movies and hopefully have a good report from the docs at the end of the week and get back home. then time will tell what comes next for us. I scribbled down some thoughts when I was real week the past few days of some other thought and comments I had:

1. exactly 1yr apart is there a time release infection? deja vu' you got to be kidding me

2. up in the middle of the night watching the movie "born on the 4th of july" not a good idea

3. Pain changes everything-- you cannot be yourself

4. you can ask for Grateful dead music in the MRI machine and get it! although doing 30s breathe holds 3days after open heart surgery is as hard a workout as you can imagine. aparentely I am the only one that has even attempted to get all the way on those.

5. I am now a fan of the show "House" . it just so happened to be a house marathon week on the tube. It seems that every episode was about me and if I was a doctor i would be just like house!

6. It really sucks that 'vs.' is not a station received at the hospital or hotel--that's not right. GO BLACKHAWKS the city is a buzz with the Hawks Hey does anyone have tickets to
Sundays game in Chicago?

I will sign out for now and hopefully update things again soon! need to get out of this room now before being closed in again.

Jay