Update from Matt: Unfortunately Dyan proceeded to enter into this sudden onset tonic/clonic seizure alone commencing at 5:18pm Friday 25 Oct.
I was taken out of the room one-minute prior to seizure onset to answer an unscheduled phone call with Dyan's Anesthesiologist from the hospital, to discuss her upcoming procedure management as a complex patient with 22q11.2DS involving multiple specialists. The call lasted about ten-minutes.
I had the SAMI-3 Seizure Camera operating which captured this event.
I returned from the call to find Dyan struggling to breathe, spasming, cranial segmented dystonia with bruxism, SpO2 86% in status epileptus, rolling seizures, having further multiple seizures and unable to communicate with me. She had been unable to draw my attention to her medical emergency whilst I was in the room next door on the phone.
Dyan's seizures resolved thirty minutes later with the application of ASMs (Anti-Seizure Medications).
I had to manually clear airway during this event.
BP went from 126/68 mmHg, HR 79bpm during event to BP 94/60 mmHg, HR 52bpm at recovery.
Temp was febrile 38.2° at onset, reduced to 37.4° at recovery.
Oxygen saturation was below 90% SpO2 for more than 20-minutes…
I still don't have access to urgently required medical equipment to manage these medical emergencies for Dyan appropriately and safely at home;
– Medical suction device
– Medical Oxygen Concentrator
We are still in discussions,… for over two-years,… with the WA Health Department, who is responsible to provide access to these essential items.
Oh sorry Di my hubby ended up in the hospital today in Waterford same hospital I was attending happened on the bus could not handle him but all was fine back to newroligest again tablets
Matt & Dy im so sorry you are going through this! Do you have either Aida Care or country care where you are? Im not 100% but are positive they do sell oxygen cylinders and the oxygen machines!
Oh my that came on quick that must been so scary I get those episode of not able communicate and there really scary I'm sorry that happen hun I'm glad you recovered quickly but I bet your body sore jazzy you did a great job trying to help your mum I wish you could get service dog 2 would be extremely helpful Dy u did so well threw that episode ❤❤ Have u ever tried pandol and nerophen liquid type my doc prescribes liquid as it absorbed by the body more easily and just wondering if that would help more cause gi issue I hope your wound in your mouth heals quickly Sending u both lots love
Those Odansetron foil packets are the bane of my existence!!!! I hate those things with a passion. What doesn’t help is how tiny the 4 milligram ODT “pills” are!!!! I’ve lost more of those than I would like to admit in the carpet of the house I grew up in🤪🤪🤣🤣😂🤪. Thankfully, the 8 milligram (which for me is SOO more effective than the 4) is a million times bigger. I call those foil packets not just childproof, but human proof!!! 😂😂😂😂. Your seizure alert cat is really slacking at his job!!!! Having a service dog for my mobility issues, seizures, POTS, and more is something I’m wanting to do in the future. Is that something Sir and Dy may look into? It would at least give Dy and you peace of mind about being alone, but it would also help with Andy’s anxiety, autism, and sensory issues too. Also totally unrelated, but is Sir just as much of a pork chop as he was when you first made that comment? 😂😂😂😂
I’m sending so much love, prayers, and healing thoughts to you both. I’m so sorry that Dy is going through this. I’m going through hell myself right now, between my knee joints possibly bleeding due to twisting that happens inside my knees when I stand and pivot to transfer between my wheelchair and my bed or another surface. Between bleeding internally and having really severe depression which medication isn’t helping, my physical and mental health are progressively going down the drain, especially since they’re both connected. My intro to my life would be, “Welcome to the hell/dumpster fire/shit show that has been my almost 19 years of life. Anybody wanna trade bodies? ‘Cause the shit this one does has me pissed almost constantly.” I always joke that my hair, skin, and nails are so strong because they have the only working, and normal amount of collagen in my entire body, I wish we could just inject it into places where it actually matters. 😂😂 Maybe leave a post it note where Dy can see it that says “if feeling seizure coming, CONTACT SIR NOOOOWWW!!!!!!” 🤪🤪🤣🤣🤪🤪 I apologize for such a long comment. I’m really into writing so my comments are like essays, because I remember something and can’t remember it for long enough to not immediately start typing it. For anyone that did actually read this far, I’m very grateful. P.s. do my comments need a TLDR like Redditors use? I’m starting to think so!!😂😂😂😂
Update from Matt:
Unfortunately Dyan proceeded to enter into this sudden onset tonic/clonic seizure alone commencing at 5:18pm Friday 25 Oct.
I was taken out of the room one-minute prior to seizure onset to answer an unscheduled phone call with Dyan's Anesthesiologist from the hospital, to discuss her upcoming procedure management as a complex patient with 22q11.2DS involving multiple specialists. The call lasted about ten-minutes.
I had the SAMI-3 Seizure Camera operating which captured this event.
I returned from the call to find Dyan struggling to breathe, spasming, cranial segmented dystonia with bruxism, SpO2 86% in status epileptus, rolling seizures, having further multiple seizures and unable to communicate with me. She had been unable to draw my attention to her medical emergency whilst I was in the room next door on the phone.
Dyan's seizures resolved thirty minutes later with the application of ASMs (Anti-Seizure Medications).
I had to manually clear airway during this event.
BP went from 126/68 mmHg, HR 79bpm during event to BP 94/60 mmHg, HR 52bpm at recovery.
Temp was febrile 38.2° at onset, reduced to 37.4° at recovery.
Oxygen saturation was below 90% SpO2 for more than 20-minutes…
I still don't have access to urgently required medical equipment to manage these medical emergencies for Dyan appropriately and safely at home;
– Medical suction device
– Medical Oxygen Concentrator
We are still in discussions,… for over two-years,… with the WA Health Department, who is responsible to provide access to these essential items.
They are putting Dyan's life at risk.
Oh sorry Di my hubby ended up in the hospital today in Waterford same hospital I was attending happened on the bus could not handle him but all was fine back to newroligest again tablets
Oh sweet Dy….this one really scared me!! It was a really bad one. I'm so sorry 😢 sending love and hugs to you and Matt❤
Matt & Dy im so sorry you are going through this! Do you have either Aida Care or country care where you are? Im not 100% but are positive they do sell oxygen cylinders and the oxygen machines!
Oh my that came on quick that must been so scary I get those episode of not able communicate and there really scary I'm sorry that happen hun I'm glad you recovered quickly but I bet your body sore jazzy you did a great job trying to help your mum I wish you could get service dog 2 would be extremely helpful
Dy u did so well threw that episode
❤❤
Have u ever tried pandol and nerophen liquid type my doc prescribes liquid as it absorbed by the body more easily and just wondering if that would help more cause gi issue
I hope your wound in your mouth heals quickly
Sending u both lots love
I’ve never experienced anything like this…. I have Autism, ADHD.. other issues needing to be investigated…
Those Odansetron foil packets are the bane of my existence!!!! I hate those things with a passion. What doesn’t help is how tiny the 4 milligram ODT “pills” are!!!! I’ve lost more of those than I would like to admit in the carpet of the house I grew up in🤪🤪🤣🤣😂🤪. Thankfully, the 8 milligram (which for me is SOO more effective than the 4) is a million times bigger. I call those foil packets not just childproof, but human proof!!! 😂😂😂😂. Your seizure alert cat is really slacking at his job!!!! Having a service dog for my mobility issues, seizures, POTS, and more is something I’m wanting to do in the future. Is that something Sir and Dy may look into? It would at least give Dy and you peace of mind about being alone, but it would also help with Andy’s anxiety, autism, and sensory issues too. Also totally unrelated, but is Sir just as much of a pork chop as he was when you first made that comment? 😂😂😂😂
I’m sending so much love, prayers, and healing thoughts to you both. I’m so sorry that Dy is going through this. I’m going through hell myself right now, between my knee joints possibly bleeding due to twisting that happens inside my knees when I stand and pivot to transfer between my wheelchair and my bed or another surface. Between bleeding internally and having really severe depression which medication isn’t helping, my physical and mental health are progressively going down the drain, especially since they’re both connected. My intro to my life would be, “Welcome to the hell/dumpster fire/shit show that has been my almost 19 years of life. Anybody wanna trade bodies? ‘Cause the shit this one does has me pissed almost constantly.” I always joke that my hair, skin, and nails are so strong because they have the only working, and normal amount of collagen in my entire body, I wish we could just inject it into places where it actually matters. 😂😂
Maybe leave a post it note where Dy can see it that says “if feeling seizure coming, CONTACT SIR NOOOOWWW!!!!!!” 🤪🤪🤣🤣🤪🤪
I apologize for such a long comment. I’m really into writing so my comments are like essays, because I remember something and can’t remember it for long enough to not immediately start typing it. For anyone that did actually read this far, I’m very grateful. P.s. do my comments need a TLDR like Redditors use? I’m starting to think so!!😂😂😂😂
The seizures came on so quickky. Lucky the SAMi-3 movement detection camera was recording! 🙏🩷
Sending love and support 🤕🙏🥰
Iherex😊