Here and Back Again

We've spent the last week at the ever generous Noni and Papa's house. After being released the day after surgery we resumed our battle with Tessa's pain. The methadone seemed to make little difference, and after talking with several doctors the dose was increased twice. Despite this she still required her maximum dose of oxycodone every two hours, and still she was in pain. It's agony watching someone you love have to suffer so much, and it's only made worse by the fact that she's so small and defenseless. I keep thinking, she hasn't even had time to do anything wrong in her life-she's never hurt anyone or made a bad decision, why does she have to go through this? But that is just one of the multitude of thoughts that make this experience that much worse.

Casey and I spent the week trying to keep her comfortable (and failing miserably): waking every few hours at night to try and stay ahead of the pain, draping her head, tummy and feet with wet cloths that need constant refreshing and ice packs for her arm, hands and knees. Casey went back to SLO on Sunday to get in a couple of days of work (government assistance will only get you so far). On Monday I made several calls to the Pain Clinic to let them know that Tessa was still suffering way too much and to report how much medication she was requiring just to avoid the back arching toe curling pain. Later that afternoon I got a call back from the pain doctor who said that the rate at which her medications were being titrated and the dosages that she was receiving puts her at extremely high risk of overdose and death and that I needed to bring her in to be admitted immediately. So there I was, all alone, racing around packing a bag and trying to get everything we would need, got her into the car and raced over to the hospital all the while checking to make sure she was breathing. One of the more stressful moments of my life.

Tessa and I are now safely ensconced back at the hospital where she seems to be doing relatively well. She has a pretty decent cocktail of morphine, methadone, toradol (super-duper ibuprofin), ativan (anti-anxiety), and atarax (for the itching all the narcotics cause). She finally got a good nights sleep last night. Yes, I slept a little but come on people, hospital cots are not the most deluxe accomodations. I'm going to need a four hour massage when this whole thing is done.

We've got doctors from Infectious Diseases, Immunology, Endocrinology and Psychiatry coming in this afternoon to see her. Endocrinology is presenting her case at a conference this afternoon. As for Psych, they are here for support. Tessa has a fair amount of anxiety now because of everything she has had to deal with, and she's starting to look like the PTSD poster child (that might be a slight exaggeration but not by much).

Tomorrow she will be having another MRI and some x-rays. For some reason they like to schedule the MRI's for as late in the afternoon as possible so that she has to fast for like 24 hours on top of everything else. Don't get me started. These are the only times I'm grateful she has such a small appetite. There is going to be a huge round-table discussion about Tessa tomorrow afternoon involving all of the specialties that have seen her to see if they can come up with any new ideas and a plan on how to move forward.

Thank you all for your prayers and support! Jennifer Hinson, you are an angel. Thank you so much for your gift, we are very grateful. Thank you to all of the family who has rallied to make Tessa smile. Thank you to Dee Dee for dinner last night, and an advance thank you to Katie (and Marc), Sam, Elle, Noni, Jennifer and Michelle for bringing us lunch and smiles this afternoon. We love you all!!!