Proud cat mom to Kira and Nushi!!!
4/5 Mom has been less responsive to commands today, but has moved her arm and opened her eyes for Jeremy, though both were spontaneous. The problem is that unless a response is on command it is hard to know if it is an involuntary movement or voluntary movement. I told Jeremy that if she can open her eyes on someone else’s command, she can damn well decide to open her eyes to see her son. We understand it’s not as clinically relevant, but it fits my Mom’s spirit and we take comfort in that. Still, we both left the hospital disheartened because the EEG was not good today and we worried that the only reason she had doen well yesterday was because of the megadose that was given her, and that the maintenance levels wouldn’t be enough. I couldn’t sleep till 4am. I walked around the house “talking” to Mom for hours.
4/6 We weren’t sure there were going to be more up days, but today Mom has opened her eyes on command 6x and it’s only 3pm! She grabbed her friends hand this morning and the most important and wonderful thing is that the EEG showed significant improvment. We still have no idea what kind of damage has been done to her beautiful brain, but she knew her friends were here, she knows her name and she can respond when she’s not too tired. For the first time today the neuro doc spoke of rehabilitation. Now that we know she can improve on the maintenance dosage of the Cerebyx I hope it will be a little easier to ride the ups and downs that are inherent in the healing process. We are all very grateful.
4/4 It’s been a hard couple of days, so I’m sorry for taking so long to update you. There had been no good changes in the only thing that is a real problem right now and that is the seizures in her brain and lack of of responsiveness other than a slight response to pain stimulus. Last night was really hard because she is no longer sedated which means she can likely feel the tube in her throat and any other discomforts, and she looked like she was in pain, which is always hard to see. We could have been intrepreting it wrong, but I’m sure you all understand.
However, today she was able to actually open her eye a little bit on command, moved her arm over 8 inches and flexed the fingers of her right hand! These are all small steps, but have been heartening and we are all feeling more hopeful than we have in days.
4/4 (cont) I know I told you they were going to try a new drug. They gave her the initial dose of Cerebyx at 10p Saturday, 4/2. They didn’t see any change in the seizure pattern Sunday am, and this drug usually takes effect quickly, so they gave her a large dose on Sunday around 10am, and will follow that with a maintenance dosage. We were told this was the last thing to try. So when we started getting moving it was a huge relief. Not out of the woods by any means, but we are grateful.
Tried to capture what has been happening. Here it is:3/29So my mother is still sedated and on a ventilator. Their initial diagnosis was focal seizures. She is having almost continual seizures in her brain, though the sedation is keeping her from convulsing. This is not good news, but we’re not giving up hope that the damage to her brain, her beautiful brain, will be minimal. We won’t know more for a while, but I will give you an update when we know more
Right now she is stable and under sedation. They don’t expect a sudden crisis, so we are holding off on that for now. She probably will need my help when she beats this goes home.
My brother, father and I do understand that this could go very badly. But my mom is so strong it’s just hard to believe so we are hoping for the best at this point.
3/31Hi everyone, Mom is not responding to much to medication and continuing to have brain seizures. They are starting to take her off some of the meds and was are going to see what happens. I’ve been told to be there as soon as possible so I’m leaving tomorrow at 2 p.m. I will be there at 11 p.m. your continued thoughts and prayers are appreciated.
4/2Hi All, I flew in last night at 11p and Jeremy took me straight to the hospital. Was there till 12:30. At hospital again now. She has a slight fever, but they gave her tylenol and it’s coming down. Other than that all vitals are good. She is breathing well and will probably be fine if they take it out. Jeremy has given her 2 doses of the CBD and they will try a new drug tonight starting at 10pm. I’m playing Mozart for her now as it helps with epilectic seizures and she likes Mozart.
The good thing is she is stable and all her vitals are good. The bad thing is that the seizures in her frontal lobe have been pretty much continual and so far none of the meds have made a difference. They are trying a new medication tonight, I’ll get the name later.
OT: Mom update
On a plane to go see Mom, things aren’t going well but we are not giving up hope! More later.
OT: short update
UPDATE: So my mother is still sedated and on a ventilator. Their initial diagnosis was focal seizures. But she is having almost continual seizures in her brain, though the sedation is keeping her from convulsing. This is not good news, but we’re not giving up hope that the damage to her brain, her beautiful brain, will be minimal. We won’t know more for a while, but I will give you an update when we know more.
My powerful and supportive fellow Orbters. My mother needs your prayers. Her name is Linda, and she lives in Joplin, MO, Over a month ago she fell and hit her head (temple….) which caused a sub-dural hematoma, or brain bleed. It was small and the neurologists thought it would be ok. She’d been getting regular scans, and the bleed had been getting smaller, but today she started acting odd and not processing things correctly. She then slumped to the floor and could hold on to my brother’s hands but was otherwise unresponsive and went into convulsions. She was taken to the ER and bloodwork and CT Scan don’t show anything bad so she is having another MRI. She has recently been able to squeeze my brother’s hand to let him know she was hearing and understanding him. It is SO hard being so far away and so far I don’t know how much danger she is in. This is my first week of full-time work (was supposed to start 2 wees earlier) but if I need to I’m going to get there ASAP work remote from Joplin. I’m SO worried and scared. So please, I’d like to harness the power of the Orb for prayers, good thoughts, or whatever juju is your thing. My mom is SO strong and good to others. She needs to be ok. PLEASE!!!!
OT: Prayers please
Hello my wonderful friends of the Mega Orb! As I write this Nushi has once again snuggled onto my lap making it hard to type, but damn cozy. She is now approximately 3 and 1/2 and in the last 4 months has passed the age where she isn’t sure about being pet when she’s on me. She now settles not on my knees or calves, but right up close where she can be loved on. Kira continues to be a love and cuddle buddy. It’s lovely!
My big news is I FINALLY HAVE A JOB! It is a 6 month contract with the possibility of 12 months and a slight possibility of a full time job. I will be working with a friend I have known for years as a Program Coordinator III in Pokeman’s Project Management Department! It is fully remote so no worries about covid shutting things down again. I’m very nervous and very excited!!! I wanted to let you all know. I’ll give more updates soon. But until then….
((((((((((((((((((((Mega-Orb and Team Nushi)))))))))))))))))))