Our hospice RN was on vacation on Monday so we haven’t seen her since Friday of last week. That’s five days of no in-house medical support. Of course their on-call staff was only a phone call away but no normally scheduled visits.
I told her all about Satomi’s last few days-constant sleeping, no eating, no drinking, intermittent pain, weakness, confusion, slurred speech, all of it. I asked her to give Satomi an enema to keep her bowels moving. Her lack of eating and drinking was making the poo softeners ineffective and she was getting impacted.
At the end of her visit the RN made several important observations to me. There are signs that her digestive system are slowing and losing function. This slowing of the metabolism is not unusual in brain stem tumor patients at this stage of the disease. The vomiting is closely related and is also normal in this case.
Satomi’s speech was slurred and confused. Her consciousness and interaction was limited. The RN was surprised by this and didn’t expect this condition for many more weeks.
She highly recommended liquid or semi-liquid foods from now on-broth, pudding, ice cream, soft tofu, etc. This is not only for ease of eating but also to minimize damage if Satomi inhales the food instead of swallowing. Liquid foods are easily digested and quickly absorbed. She cautioned against the chicken curry we gave her for lunch.
She agreed with my reduction of nighttime medication but recommended increasing anti-axiety medication (Ativan). Much of Satomi’s pain can be controlled with relaxation and the Ativan will help this to occur.
We have a good handle on her medications but there remains an issue. The effect of Satomi’s normal medications will vary with her metabolism. The RN advised that some medications can stay in her system much longer and could result in extended effective periods. This could explain her sedation last week from what was her normal nighttime dosage.
The other issue is her increasing tolerance to medications. I was concerned over my last Fentanyl patch increase. The extra 25mcg/hr seemed a bit heavy. She advised that a 12.5mcg/hr patch is available but would likely not have an effect on Satomi given her high baseline dose. I understand the logic and basically agree since headaches still occur; however, the fact remains that Satomi is physically small and no one knows how she would react. Given her nearly sedated condition, I want to try a 12.5mcg/hr increase before stepping up to a 25mcg/hr patch.
When I first started this blog, I searched around for examples of other blogs with serious subject-matter. While I admit that I hadn’t done an exhaustive search, no obvious examples were readily available. I needed to know where the line was. How much serious information should I reveal before it becomes too much? I’m sure for some I’ve already crossed over.
I’m at that crossroads again: post it or not? Satomi and I had discussed this before and we both firmly believe that some good has to come from this mess and educating all of you maybe just the thing. With that in mind, I submit to all of you a disclaimer for all future posts.
There will be difficult times ahead. Many of you may not want to read what happens next to our beloved Satomi. While I promise to continue to see the humor in things, there are many things that will be far from amusing. I will do my best to speak the facts as I understand them but it is up to each of you to stop reading if things get too difficult.
If you opt not to continue reading this blog, I want each and every one of you to know that we’ve been blessed to have you with us. Your support, comments, and sheer numbers have helped me hold it together in these trying times. I could not have gotten this far without all of you on the other side of my computer.
It was a bad day. Satomi had headaches and was restless all day. She had a minor seizure followed by two serious seizures. In the midst of all this, she got nauseas and lost her lunch and her breakfast from hours before. There were signs of perseveration and irrational behavior. While it is true that she was awake and alert, there is an obvious downside to no sedation.
We fed Satomi what was roughly equivalent to a full breakfast for her; she had juice, water, and apples too. She was vocal although it didn’t make much sense.
Since she was OK, I was leaving to go to work. She pulled me close and started talking gibberish about my working and our friends helping.
I’m still not positive what she said but now that I’ve had some time to compute, I think I get it.
She couldn’t take the pain and wanted me to stay home with her.
I was confused at the time so she got frustrated. She tried to explain it to me again but it made no sense at all.
Satomi got mad and verbally pushed me away, “Go to work now. You aren’t coming back.”
Those statements were clear and now they are in context. Anger is one of her defense mechanisms so it all makes sense.
Satomi awoke this morning at 6:00am. She’s groggy but communicating. We’ll get as much food and liquids in her as possible. She has no headache but is already restless and moving around. We will watch her closely today.
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