Shaken, rattled and rolled

Is it possible to live a lifetime in a day? Of course it is. After today I'd be tempted to say you can live a lifetime in 8 minutes. That's how long you have to wait until you can hit the morphine delivery button to get another dose. I wouldn't have believed that the hands on a clock could actually stop until today. Last night was another experiment in torture. Though everyone here at Lucille Packard Children's Hospital (LPCH) is as kind as the day is long, Casey and I have removed to rose colored glasses. Tessa slept soundly last night until 2:30 when she woke up in agony. Over the next couple of hours I did my best to get her any relief. The doctors were slow to increase her dosage, but I came out swinging. Still, it wasn't enough. The nurses wanted her hooked up to all kinds of wires to monitor her after the dosage increase, but she was already in so much pain it was just kicking a downed dog. I told them she needed more, but they were slow to respond. Finally she passed out at 6 this morning and we both managed a few more hours of sleep. Once again she woke to the cruel bedfellow that has become all to familiar to her in the last month and a half. Again, it was like drawing teeth to get the doctors to move in the right direction. She suffered all morning and afternoon. They told us that likely she was stressed, and wanted to giver her Ativan, an anti-anxiety drug. We balked saying that she was stressed because she's in PAIN! But after the team talked it up we decided to give it a try. Between the ativan and the dilauded she became totally out of it. She was exhausted but couldn't sleep, her eyes rolling back in her head only to snap back time after time. We tried to take her to the play room, but five minutes after arriving she threw up the only thing she had eaten all day.

When we got back to the room we said we wanted to talk to the Pain Team. When they got there I unloaded telling them that she had been in less pain when we had her at home. I told them that since we had gotten here she had suffered more, experienced more discomfort and nausea than at any previous point. They decided to overhaul the plan and put her back on the oxycodone and tylenol at a much higher dose.

She is finally asleep, and I'm hoping that we are both going to get some rest. She is scheduled for another bone marrow biopsy for Monday, this one in her femur. After that she is going to be put on tetracycline (an antibiotic) for a couple of weeks as part of preparations for a very specialized type of bone biopsy that will be performed in LA. We are hoping and praying that we get the pain under control quickly so we can take her back to Casey's parent's house tomorrow and avoid any more time in the hospital.

I'd like to say thank you to everyone for the gifts that you have given to Tessa and our family. I have made no attempt at thank you cards, and I hope that you can all forgive me. Linda and family: thank you so much for the Dora care package, Tessa hasn't been without the blanket since she got it!; Kristin and family: thank you for the butterfly observation kit-we can't wait til we can get it going; Ruda: thank you for the coloring books and sticker set; Jennifer and Co.: you guys are amazing, Tessa opened your care package today-great stuff for hospital bound girl!; Kristy: thank you for dinner and your amazing reading skills, it was such a relief to see her smile and engaged!; Katie, Marc, Sam and Elle: thank you for dinner and your ongoing love and support, your girls are magic. If I have forgotten anyone I hope you can forgive me. If I'm not returning texts or answering calls, be patient. I love hearing from you all, but at times I fear that if I open my mouth I'll start crying and never stop.

Pray for our girl, she is in the dark night of the soul.