time in a vaccum

Once again I've let some of you down by failing to post regularly to the blog. All I can say is sorry. I've just been a little preoccupied. When in doubt, you can always call or text us...even Roger. Just be forewarned that we might be slow in returning calls/texts if 1) we're busy, or 2) Roger just doesn't have it in him to return the call.






Where we have been....where we are.....where we are headed...

This is going to be a slow, slow process. All of the progress Roger made in that first week after surgery seems like a distant dream.

On a daily basis Roger is hooked up to a liquid feeding to a feeding tube that sticks out of his side. It feeds directly into his small intestines. I have to flush the tube first and then attach the liquid food to him via a pump on an IV pole. The pump "feeds" Roger 60ml an hour of this smelly liquid nutrition. Prior to starting the feeding, I hook up an IV-feed of antibiotic to him which runs for 30+ minutes. He will stay on this antibiotic for another 1.5 weeks.

Gotta tell you. I never thought I'd be doing this in a million years...and the initial prospect was pretty daunting. Once you kinda settle in, the scary feeling goes away and it kinda just becomes part of your "new normal". The other part of the new normal (and quite foreign for ME!) is doing more laundry. In an attempt of keeping as "sterile" of an environment immediately next to Roger's skin - I've been changing sheets every day or every other day. I'm trying to restrict the set of towels for the feeding and IV and then wash them every day.

During the day, he is eating and drinking by mouth - but in small doses. Because the size of his stomach is smaller and his system is not "used" to eating, he can only tolerate a couple teaspoons of food at a time. If he eats too much he has considerable discomfort and then is reluctant to eat any more the balance of the day. Its a fine line we are walking....he needs to eat and drink on his own by mouth to ever get to the point of not having the feeding tube. Naturally he doesn't want to eat in the morning after coming off the feeding tube all night...its a balancing act.

Roger is still very weak. Down about 28 pounds. His muscle mass is virtually gone. Every day he is supposed to do leg and arm exercises. He does those but is being very conservative. You see, Roger is very very afraid of doing anything that might cause another leak in his system. He is terrified that he might experience that horrific pain again. In fact everything he does or doesn't do right now is tied to that fear. He will not push his breathing exercises - will not try to take it to the next level (despite what the respiratory therapist said) - he is being very very conservative. Its odd for me to see him this way. Roger is one of the most fearless people I know AND one of the most laid back people I know. He is neither right now.

Physically he is making slow -but steady- improvement. He still has a long way to go. The whole process, as you can imagine, is starting to take an emotional toll on him. He has been pretty down and blue. Completely out of character, he has not wanted to talk with anyone. He's just in this funk. After coming home from the hospital, his disposition improved slightly but has gone down. I think he had this huge moment of fear - no matter how good a caregiver I am - that being at home away from the hospital, means that he is 15 minutes away from a nurse or doctor if there was an emergency verses a nurse just down the hall if we were at the hospital. With each passing day, he seems to "settle in" a little more and the fear seems to SLIGHTLY abate with each day.

We had the longest stretch of sleep yet last night - 5 whole hours in a row!!!! I think we both may feel like superheros today as a result. I'm sure just by typing this, I have jinxed us to a night of little sleep tonight.

We go back to the infectious disease doctor's office this week (we go every week). We'll pick up more antibiotic supplies and will get a check up for him. We don't meet with the surgeon until the end of the month. Do we ever get to escape this health care merry go round?? Stop the ride we want to get off....

At the end of the month, I am supposed to start working at the new company. After this long journey, I could use another couple weeks "off'. At the risk of sounding melodramatic, I feel like we've been in the midst of this grueling war since December 14. It just continually pounded away at you. We had hopes of going to Florida for part of the recovery period during January while I was off, but the doctors won't release Roger until the end of the month. I may have to postpone my start until I can recharge my batteries (and Roger's) a little.

I know the world doesn't stop when someone gets sick. Life goes on and all that. For me though, the world has slowed a little....not stopped....so that we can get Roger through it. And I'm ok with it.

I'm anxious to get Roger "back". He has a one of a kind personality that you feel the void of pretty immensely. I'm anxious for him to regain his confidence. Like I said, I'm anxious to get him back.


much love to all. I hope to have some Roger moments to share with you soon.