Hi everyone. Sorry for the delay. Been crossing swords a bit at the door with folks again. I know. Ya. But I’m not a yes man when I see a situation that is illogical and founded in the craycray.
So yesterday I was taken to task for Ruby’s weight loss. Well, she wasn’t tolerating any feeds without 2 antinausea drugs. So we went as slow as they would have with a bag feed anyway. Same rate, better food. The next step is to increase that. Well found out this morning that 50 is way too much so back to 35, safe zone. Every 1.5 hours. All night, all day. So this is the hard few days for me. I should be completely incoherent by 4 am tomorrow. Maybe I’ll have a nap then.
So, the funny thing was when I was taken to task for this (which by the way was the result of our “family meeting” with the 8 docs and Brian and I – very friendly) she was concerned about not having a backup plan. What I SHOULD have said was “uh, this IS the backup plan. Your plan was not well tolerated, therefore we decided on this one. Therefore….we ARE on the backup plan.”. She figured premeding Ruby with a bunch of benedyrl and pushing this feed she is allergic to is a great way to feed her. I laughed and laughed and said uh, no. No thanks. It’s part of our care plan. I’m not sure why if we already had this big meeting to determine that she doesn’t tolerate the feeds they give and there’s nothing else they can give due to her allergies……and also to give her washed platelets (which is btw the battle this hour)….why would I need to recover ground we already covered. And why in such a confrontational defeating, non teamlike way. I mean, aren’t we on the same side? Ruby’s side? Aren’t we supporting each other? That would be nice. Every time I have to defend decisions already made I truly feel retraumatized and instantly needing to defend this doorway. So now I need to reexplain again. And again. She needs washed platelets. The end. I pointed them back to themselves and said, your process is not something I can fix or even comprehend. All I know is we’ve established some treatment needs, written them down, had numerous meetings and come to understand Ruby responds differently than the median patient. So ya. It’s like being hauled into the office to explain something, everyone coming to an understanding that appears to be supportive and more like a cohesive approach, then to have it written down and made into a sort of “policy” and then….when I’m following this plan and supporting these decisions, suddenly it’s as if it’s completely forgotten and reset back to default. You know, like when you pull your battery in your computer and bango, it’s back to defaults. *sigh*. It’s a battle followed by a conversation followed by a battle followed by me standing at the door and asking when we can be released.
Breathe in some sustenance for yourself, be it sunshine or chocolate. The medical establishment doesn’t like it when any of us doesn’t fit the norms. They seem to forget the power of being an individual. When they are worried, they will backtrack to the proven norms, despite the evidence in their faces. Yet, they would understand completely if it were their own personal battle, rather than the one fraught with norms, liability, and cost overheads. You will probably not ever have them understand the issues of allergies if none of them experience severe food allergies in their own lives. You keep doing what seems right, remain supple and strong, lose rigidity. Take care of yourself so you can continue to power Ruby. Love surrounds all of you.