Got up, went down, had breakfast -Kiyomi, my sister came -went to rad – had another small seizure on the table but I guess finished rad since brought mask home – Sean cancelled my port-a-cath placement with my increased risk of infection but will probably still get IV herceptin to treat so it doesn’t spread – had to stop by pharmacy for more antiseizure med – Kyom here to translate to my mom what happened, what could happen and what the plan can be from here on – tomorrow no labs/ekg for me -just kandice well check! Wondering if I’ll get through this? Feel so overwhelmed/unstable! I sound coherent but really! Had lunch from Flame Broiler -chicken/veggie bowl with brown rice – good for u! Just need to rest! Tomorrow not so busy now! Gonna rest now! Have a great,dry day everyone! Yes, it was raining here earlier!
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Woke up just a bit ago -weird new reality! I didn’t remember if I took my morning non-prefood meds till I texted Sean and so he gave them to me to take and have to take my w/ food meds in about half hour or hour from now with food! Confused! I can’t reach them so I don’t know if I took them or not! I need so much physical and mental assistance now for certain things! Need to get up soon for rad as well as take meds with breakfast! I don’t even know if I have the leg strength to stand up and walk down the stairs! Maybe I need to go to the hospital! I feel like I may black out again if I get up- my BP is really low!
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After Satomi’s seizure on the treatment table yesterday, the Radiation Oncologist told me that her Decadron dose was to immediately increase from 8 mg per day to 12 mg per day. If there was any signs of headache or further seizures, I was to increase it again to 16 mg. As of this writing and the recent seizure in the family room, Satomi has taken 16 mg of Decadron today. I need to change her mediation box again. This is a lot of corticosteroids so weaning her off of them is going to be a long road…again. We only have one more Radiation session so hopefully we can start next week.
I’m looking for alternatives to this safety gait belt thing. I couldn’t find anything in the PT supply stores online. If any of you PT folk have any ideas, sent me a message.
I have a nice rockwall climbing harness from a past life that I think would work very well but I am concerned that taking it on/off will be very cumbersome. It would be impossible to remove quickly in case of an unplanned need for a bathroom. I do think it’s washable though.
I’m going to dig it up and give it a try. I don’t want Satomi to fall and cause herself more pain.
Satomi had another seizure today while she walked across our family room toward the dinner table.
Her Mom was helping her and I was in the kitchen. I was surprised and upset that I wasn’t informed about her moving downstairs. That became a secondary issue when I saw Satomi’s knees start to wobble. These last few days I’ve learned that it’s the first obvious sign that she’s about to collapse. Her Mom didn’t have the position nor the strength to catch her so I ran over and grabbed Satomi’s safety belt which I am very happy to report that she was actually wearing.
The belt is actually Satomi’s “gait belt” from her PT days. It is intended to be a secure hand hold to perform patient transfers or to provide some measure of safety for unstable patients walking. It is not designed to support a patients weight. In this regard, it is really is a useless device.
After grabbing her, Satomi quickly proceeded to slide down through the belt until it was stopped by her arms. I’m sure it would have been very painful if she had been conscious.
Limp weight is impossible to carry. I did not want to put down on the ground to readjust my grip so I called for my Dad. He came downstairs and helped me lift Satomi onto the couch. A few seconds alter, she awoke obviously upset. We were all very upset.
I asked why I wasn’t told that Satomi was coming downstairs. I’m still quite enraged by the answer so it would not be appropriate for me to discuss it in open forum here. However, consider this question: What would have happened if Satomi had the seizure while still on the stairs only a minute earlier?
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