Day 4: Why We Make No Plans

Before I get to an update on JoAnne, I want to make you aware of a project our daughter Kelly has undertaken to brighten JoJo's room and spirits. For Mother's Day, she had taken hand tracings of her family and made this card. It got her to thinking that given the constraints on JoAnne's room, this would be a nice way to display good wishes from friends and family. If you wish to participate, simply trace your hand on a piece of 8.5 x 11 white copy paper. Include a message in the palm or just sign as you wish. Send to Kelly or me at our Arcadia Drive address. They can be folded as Kelly will copy them on to colorful paper and cut them out before putting them on the wall of JoJo's room. You can also scan your tracing and send via email to kevinapetersen@gmail.com  Or you can send them directly to JoAnne at:

Unit 4B

University of Minnesota Hospitals 

420 Delaware Street SE

Minneapolis, MN  55447

We already have a handful of responses. In truth, we have dozens of responses to earlier notices Kelly sent to her friends, but I just couldn't resist the pun in "handful".

All is quiet on the 4th floor at U of MN hospitals. The front of the building faces to the right. JoAnne's room is to the very far right in the first row of windows that goes across the front. She is a low maintenance patient for me. They said she would be just like a new born, requiring 22 hours of sleep a day. She is getting all of that and then some.

It is pretty quiet outside her room as well. The biggest hurdle is keeping food on board. She is fed quite a bit of Ativan and Compazine to keep it under control, but it can be one step forward and two back at times.

So this is how it goes. All of the above was written last night. We talked this morning and JoJo felt better compared to yesterday. Kelly headed over to spend a few hours and by the time she arrived, our patient had spiked a fever of 105.2 and was delirious. They had transfused a unit of blood this morning, and weren't sure whether it was a reaction or the start of an infection. Her blood pressure has also been very low with all the drugs they are giving her to control nausea and allow her to sleep. It has been several hours now and the fever is down to 102. She seems to be sleeping ok so we will hope for continued improvement.

Such are the emotional swings. Kelly went to the hospital expecting to have a nice visit and walks in to a 105 temp. For a young mother with kids, that is a scary number. For nurses on the BMT unit, it is routine. In my head, I know that she is in a good place to get the best care, but it still creates a knot in my stomach. Wouldn't it be nice if we could just unplug our subconscious once in awhile?

A half hour ago we took JoJo down for an X-ray. To say she was out of it would be an understatement. We got her back to the room and into bed, but then her blood pressure crashed. All of a sudden the room is full of nurses and doctors and they are pumping blood and drugs into her in an attempt to get the blood pressure back up. She is being moved to ICU so they can monitor her more closely. An infection has taken hold. The inflammation causes the vascular system to relax in such a way that the blood pressure drops. While these are not unusual events in the risky first 10-14 days of transplant, they are touch and go. The doctor gets my attention using the words "critical" and "sepsis".

JoJo is still conscious.

I have been preparing myself for events like this for years. Even still, barring the door against the intrusion of fear is a fruitless endeavor. I am a spectator and it is a helpless feeling. The drugs are having an affect, and her pressure is coming up. I talk with JoJo quietly and hold her hand. "I'm going to be sick," she blurts out and goes Exorcist on us. While cleaning up, they have to cut off her blouse. "Geez! I just bought her that!" I ask the nurse if there is anything I can do to help. In a friendly voice, Nurse Rosemary says, "Just sit in the corner and stay out of the way." That I can do. See, I do have a purpose!

   

In the past, JoAnne and I have had a few discussions about the boundaries for what is published in our blog. Those talks usually happen after I have exceeded them in her mind's eye. I try to be sensitive as there are many unglamorous aspects to JoAnne's daily activities. Earlier today, in the midst of her semiconscious delirium, a nurse was about to undertake one of those. She suggested that Kelly and I leave the room. I thought it might be a good idea to stick around so I could learn something in case it was necessary during my caregiving. Out of nowhere in a spaced out voice, JoAnne pipes up, "You just want something to write about in your blog." You can't make up stuff like this. In the midst of panic, humor floats to the top.

Since JoJo is the last room on the BMT unit, she is conveniently located next to ICU. It is only a 2 door move to her new, and hopefully, very temporary home. We are meeting the whole crew of nurses tonight as well as doctors. Under pressure, their expertise is quite remarkable.  

Kelly and Heather came to the hospital. We still haven't figured out how to communicate in a way that transmits necessary updates without inducing panic. Going forward, it concerns me that the kid's heartbeat will quicken every time they see my name come up in caller ID. Tonight was our first challenging episode and I am sure it won't be the last.

So much for Day 4. JoJo is settled into the ICU, and the meds brought up her pressures. She was able to carry on a reasonable conversation when we left, although she remembers little of the day. I've got to get me some of those drugs. We all feel much better now than we did a couple of hours ago. 

In rereading my thoughts, I notice that my composition isn't exactly fluid when in the throes of panic. Maybe I should have a Twitter account for times like tonight.

Cancer Sucks