As of when I left the hospital, Katy had not needed a bloof transfusion for 48 hours! The doctors removed all of the drains from her stomach, her blood clotting was normal, and they started feeding her her GI again. Her H&H levels are 9-26 (completely normal would be 13-30, but that is great for ICU). She is not requiring dialysis at this time, she is off the antibiotics, and her vitals look good. Also, her cortisol levels were in the normal range.
While all of this is great news, she is by no means “free and clear.” These are all just very good steps to getting her out of ICU. I started the process of finding out our options with regards to accute care, and rehab. There are MANY variables that are being explored, and almost all of them are made more complicated by the social security administration. As I go through this proces, I am made aware of some of the real “health care reforms” that need to be made. Apparently, being a quadruple amputee doesn’t automatically qualify you as disabled to the SSA. They asked what she did for a living, I said “massage therapist,” he replies “I see that on your tax returns…are the doctors sure that she will be disabled for a specific length of time?” I almost laughed, then I bit my tongue before I said something really offensive….
I have met so many of the other families in the ICU, and they have helped me (without their knowledge) to realize that we are the lucky ones. Where as it can be really frustrating to not have anyone to blame for what happened to Katy, it can (though it seems counted to logic) be worse to have a person to blame. One family’s patient is a 52 year old woman with cerebral palsey. She has been in a wheechair for her whole life. For some unknown reason, the woman’s caregiver decided to forceably hold her feet in boiling water. She is now a parapalegic. The woman’s mother is a very sweet lady, and we have talked at length. I know that we all get a bit of relief seeing each other every day and asking about our respective loved ones. I can’t imagine what possesed the caregiver to do such a thing. Even more, I can’t imagine how you process that kind of betrayal and pain. Personally, it brings out a very violent, and dark, side in me to even think about someone deliberately hurting my loved ones (very male reaction, I’m sure), but in the case of someone the family has trusted for years…..I know it would make me question every decision I had made for the patient I was supposed to be advocating for. Please say a prayer for them. I can’t remember their last name now, but they are handling this with dignity and grace. I am learning by watching them.
I would like to, again, thank the Dallas mother’s group who keeps feeding me all of this amazing food! Between them, my own cooking, and the market diner, I have not had to endure any greasy fast food. I think I am getting fat! I would also like to thank Ruth Carter-Wilson, and her dad, Dr. Carter. Ruth put me in touch with her dad, who was a founding member of TIRR (Texas Institute for Rehab and Research). Dr. Carter and I had a good talk today, and he has given me many things to explore. I thank both of them for taking the time to inform me.
I had to have the “talk” with Katy today. She was getting amped up, trying to move, and getting really agitated. It broke my heart that she kept asking me to take her out of there. When I said I couldn’t, she asked why. The nurse and I were worried about her busting a suture, or getting her bp too high, so I had to tell her about the amputations. She took it well. Unfirtunately, the meds give her amnesia. She remembers some things, not others. They were not giving her an elevated dose when I left, so I feel that she will remember this in the morning. She was resting when I visited. It was one of only two times since she has been in the hospital that I have seen what I KNOW is her just sleeping. I am happy about that. Sleeping is so much more vital to recovery than being doped to unconsciousness. I let her rest, and will be by again in the morning. They have nothing planned until 6am, so i will be there for the 8am visit. She seemed to understand what I was explaining to her, and was very articulate for not being able to talk. With the docotr’s approval, she did try to move her arms. We focused on the left arm, as the right is at a higher risk of bleeding. It must be very difficult to re-learn to raise your arm. I tried it. I realize that most of us raise our arms thinking about moving our hand up. Try to move your arm by lifting the middle of your bicep. It is a strange concept. She may also have some sensation of having her whole arm there, but it being like her amputated part is just asleep and heavy. We worked on it for ten minutes or so, and (being the spitfire that she is) promised to rest…but didn’t. When she thought I wasn’t looking, she kept working at it. God, I love her! It is that spirit that will get her through this. And, believe me, she will get through this.
Most people don’t know that Katy and I changed our wedding vows to not say “’till death do us part.” Ours said “’till the end of time.” I am holding her to that. To quote one of mine and Katy’s favorite Firefly lines..”We’re still flying.”
Love to all,