Outta here...

Yesterday my mom ripped apart her IV lines and removed her feeding tube and then proceeded to swing her legs over the side of the bed while pulling her paralyzed left arm across her lap with her right. She informed the nurse of her plans to leave and her nurse told us later that she would most likely have caught my mom doing a belly crawl to the elevator if the pain from the dislodged feeding tube hadn’t caught up with her. Dana and I left work in search of a parking spot at HUP at soon as the news trickled down to us and we arrived to find my mom coherent and extremely pissed off. I asked her if she was causing trouble and she said yes and when I told her to stop it she of course told me no.

She was sent in for surgery around 6pm to have the feeding tube adjusted and will have a CT to make sure nothing leaked from the abdomen. None of this is pretty and it does make me feel mad at the world because I have to experience it, I guess that is selfishness on my part. My mother is going through hell and I have the nerve to say I am mad at having to watch her do it. I know if I were more honest with myself I would admit that I am just trying to hide the fear from myself and others; it is choking me, this welling panic rising through my system. Please God, don’t take her. I stop myself from saying stupid things like “I can’t live without my mom” because I know that isn’t true, of course I would go on with my life, raise my children without her. The fact of the matter is I just don’t want to have to do that. I need her so bad and when I think of our lives without her the ripple of fear shoots through me and I feel like I am suffocating. And that feeling makes me a little angrier with the world and all its trials and tribulations.

Kelly and Helen are the “night crew” of my mom’s visitors so they were the ones waiting with my stepfather during my mom’s second feeding tube surgery. I spoke with Kelly after she saw my mom in recovery and she said mom looked okay but a little pale. Her breathing was labored due to the pneumonia she has developed and it caused enough concern with her surgeon that they gave her medication to reverse the sedation. This is fine except for the horrible understanding that it also reverses the efficacy of the pain medications as well. I went to sleep last night knowing that my mom would spend her night in a good deal of agony.

I have managed to keep my sanity because we have heard from my mom’s doctor that they will be collecting the cells on Friday to begin the T cell therapy. We have only received approval from the hospital review board to allow the cells to be harvested, but not permission to reintroduce them after stimulation. Dr Schuster has assured us that the approval for reintroduction will come; the hospital board doesn’t let you spend $25,000 in grant money to start a procedure that they have no intention of letting you finish. The approval for the overall treatment protocol for the T cell therapy requires the full board be present and that does not happen again until next Monday. The cells take 10 to 14 days to grow, so at least we can have them started while we wait for the full board meeting to commence.