Happy Anniversary

I'm lying here on my fold out cot thinking about what tomorrow represents. It is the two month anniversary of the morning Tessa woke with her first knee pain. It also marks the beginning of a second week here in the hospital. These are not dates I wish to mark on my calendar or celebrate, but they lurk significantly in the corners of my mind. I haven't left the hospital grounds in seven days, and there are times when I forget there is even a sun shining out there. But I am grateful to the nurses and doctors who are here for us. The nurses in particular are our angels, and I have a respect for the women in this profession that I never could have fathomed without this experience.

Tomorrow will also mark the fifth day in a row that Tessa will have to fast in hopes of getting either a CT or an MRI. There is an overwhelming amount of construction being done on the children's hospital, and a month ago their MRI room was flooded. Now they have to share the two machines that the general hospital uses, and with previously scheduled patients and emergency procedures it has been virtually impossible to get in. They decided yesterday to scrap the MRI and try to get her a CT instead, but the theme of this perfect storm continued. The CT broke down and the technician couldn't be here until 5, at which point the anesthesiologist would be gone. So another day with no scan. Meanwhile Tessa can't eat or drink just in case they can fit her in.

These images are important because the team wants to start her on steroids. However they need to be sure that there are no masses (e.g. tumors) in her body as steroids would then effectively derail any possibility of diagnosis. Fortunately the team decided to get her a chest x-ray and abdominal ultrasound today. The ultrasound showed lymph nodes in her tummy in addition to some thickening of her bowel. This has made getting her a scan even more of a priority as these findings have postponed the administration of the steroids. The nurses are as furious and flabbergasted as we are at the unacceptable way Tessa has been put on hold, and quite frankly if she doesn't get her scan tomorrow I'm headed toward Radiology myself with guns blazing. The only reason I haven't done it so far is that it really isn't anyone's fault-there just isn't enough equipment. I already am gearing up for a conversation with Patient Relations come Monday morning.

Beyond this little drama, things are getting worse for Tessa again. The bone pain is returning and the tummy pain is escalating. She needed a couple doses of morphine again today on top of her maintenance medication. I'm not sure when we'll get out of here. Casey is headed back to SLO for a couple of days of work (gotta pay those bills somehow), and Tessa and I will miss him terribly. It is so much lonelier to do this when he is gone.

It's late. The hospital lullaby of crying children, clicking and beeping IV monitors, and the foot traffic of nurses is lulling me to sleep.

Keep the emails and messages coming, they are my only link to the outside world and makes this journey a little less lonely. Thank you to everyone for your love and kindness, it would be so much harder to bear this without each of you.