Day -7

Are we there yet? I'd be lying if I said the days were just flying by, even with all the distractions. Tessa was pretty grumpy most of the day today, not sure if this is a result of the increase in Busulfan or just a rough day. Poor Nana and Poppie drove up here from Carmel but only got a short visit because of Tessa's mood.

The only development is that the hospital has told us that I can't push my bed up against Tessa's for "safety reasons". They say they need to have access to both sides of the bed in the event of an emergency. Casey and I are both really annoyed. Poor Tessa has been sleeping with us for the last year, and now in the most stressful time of her life she will have that taken away from her. We took the issue to management, but they wouldn't budge. That fact on top how upset Tessa was most of the day left me with a moment of significant frustration. Had to use some of my deep breathing techniques today. Just the first of many I'm sure.

Other than the grumpies, nothing too significant to report. The dressing on Tessa's central line is driving her crazy, itching and itching. The bruising from the first attempt at inserting the line is starting to go away, and it seems like the shoulder is also becoming less sore.

Tessa got to eat some homemade spaghetti sauce that Nana and Poppie brought up. Her neutraphil levels haven't dropped low enough to put her on a restricted diet yet so she can still have homemade food and dairy.

Hoping Tessa, Casey and I stay strong through another day. Keep those emails coming, I look forward to hearing from the outside world!


Later....

It's late...10:45, but I can't sleep because I'm so pissed. The nurse shift change is at 7:30 and this evening we got Maria. Apparently the nurses have been told to keep an eye on our bed arrangement. I had shifted the placement of my "bed" so that there was a corridor large enough for the nurses to access  both sides of her bed. But this was not good enough for Maria. She came in at 9, just as we're about to turn off the lights. She shoves Tessa's bed about as far from my couch as possible without sacrificing access to the other side of her be. I'd say 98% of the nurses here are about as sweet as possible. Maria was insensitive and matter of fact while informing me that this is just the way it is. They have to have access to the oxygen pumps in the wall. I point out that there is an oxygen pump on the far side of the bed, can't they use that one? Not good enough. Have to have access to both in case one isn't working. Um, in case one isn't working? So it's not so much that I'm in your way. Rather if your hospital hasn't performed proper maintenance and made sure the equipment is in working condition you don't want to have to take the 15 seconds required to shove my couch out of the way.

Turns out I need Tessa's snuggles as much as she needs mine. I lay in her (twin) size bed with her until she fell asleep. I even tried to fall asleep there, but let's be real. My arm had no where to go, just hanging off the bed. I finally gave up and moved to my couch. And here I lay, mentally composing complaint letters to board members about the injustice of their policy. So I'm pissed and can't sleep. But I also miss that warm sweet girl that snuggles up so close to me every night.