One Week Ago Today

It was one week ago exactly as I write this that Ed and I were in the emergency room at Cooley waiting to be assessed.  My how our lives have changed--both in good and bad ways.  Good ways because Ed is still here when we weren't sure he would be after surgery.  Bad ways....well, that's obvious.

Today was a long day at the hospital.  It feels like every day is a roller coaster and my emotions are all over the place (as I can imagine Ed's are as well).

Ed asked me to try to work from the hospital today so I could be with him.  That was only semi-successful.  I did having a phone call "meeting" for about an hour while he slept, but that was about it and that was about all the sleeping Ed did as well.

Soon after I got there, his wound ostomy nurse, Michelle, arrived followed closely by Dr. Marvelli.  Ed's wounds are not healing (partly because of the avastin he was on but partly because of the amount of fluid in his body).  As a result, fluid is seeping out through the wound and also through his colostomy.  So Michelle put a new bag on that had a draining tube (otherwise they were emptying the bag every 20-30 mins).  She also put a "wound vacuum" on his wound.  This is intended to draw any fluid that is seeping through into a tube/container versus trying to absorb it with a bandage.  She also ordered an upgraded air bed for Ed.

Physical therapists arrived shortly thereafter but since Ed was pretty wiped out and the bed was (supposedly) arriving soon, we decided to try to coordinate Ed moving with getting into the new bed so the PTs left.

Swelling is still Ed's biggest issue.  It appears to have gone down in his abdomen but his legs are still quite swollen and difficult to move.

Ed had part of a sandwich for lunch and he ate most of his dinner as well.  He also had some Ensure (with ice cream...which makes it more palatable).  These are all good in helping to increase his protein which will help heal the wounds.

His case manager stopped by and we talked briefly about rehab.  Dr. Bowers also sent a case worker from Cancer Care to talk with Ed (and she also stopped by to talk to me later in the afternoon).  And Dr. Bowers came by to meet with us as well.  So all of this kept us busy.

There were some things that kinda frustrated me, but I'm learning to deal with them effectively.  For example, we weren't getting much information in terms of his treatment.  Dr. Marvelli simply said he needed to eat and get protein into him.  But no one was explaining what tests they were doing or what the results were afterwards.  So I did ask to have the Physician Assistant assigned to stop by and talk to us.  And then I ran through my questions.  For example, Ed had a chest x-ray while I was there (yes, another thing that happened today), so I asked her about why (to check for fluid in his lungs) and what the results were (that it has gone down--supposedly they saw some in the lower-right side a couple days ago when they did an x-ray).  They also took a urine sample earlier in the day--so I asked about that.  Just kinda crazy that I needed I seek this info out.  I just "assumed" that someone would be around and provide a general update.  Now I know!

Plus, because of the whole new bed, they had postponed giving him a bath and changing his bed linens.  Well, because things were pretty busy on the ward, he didn't get his bath until about 6:30 PM.  Not that this was so terrible but you can bet I wasn't going home tonite without this happening.

And, finally, around 9:15, they got him into his new bed.  Both Ed and I were expressing our optimism and basically figured we'd get him settled into his current bed.  But they got him into it, did all his vitals, gave all his meds, etc., and he was finally settled in for the night around 10:30.  So it was a late nite for me since I wasn't going to leave til he was settled.

Now that I'm learning the ropes, they better watch out!  Just like anything else, you really need to know how to advocate for yourself and just be sure to ask questions and be sure they respond to your needs and requests.

Ed is still not out of the woods.  We really need to get the swelling down so he can start moving more which will help with the liver as well (which is having a hard time).

But Ed agrees, as bad as things seem right now, he certainly is in less pain than he was a week ago. 
 So onward we go... Please continue with the prayers.