Alin's Site

The list below is updated. RED is for high priority. Orange is for medium. Green is for low priority. Black is for dead tests that are done or canceled. Status messages will be given in parenthesis.

Tests ordered are

• 48 hour EEG – Diagnose unusual seizure activity (Dead – Test completed)
  
• 1 hour standard EEG with Digital Spike Analysis and Photic Stimulation – Diagnose unusual seizure activity (Live – To be scheduled)
  
• Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (Live – To be scheduled)
  
• Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis. (Live – To be scheduled)
  

We are also waiting on a few other things to be ordered after the completion of these, the next order batch is. All of the below are considered dead until converted to live orders.

• New wheelchair (CONFIRMED: WILL BE ORDERED, WAITING ON PAPERWORK)
• Echocardiogram (repeat due to 1 year passing since last ECHO)
• 24 hour holter monitoring (repeat due to 1 year passing since last 24 hour holter)7
• CT head & spine w/o contrast and with contrast (repeat due to 1 year passing since last CT series)
• Urodynamics study (under anesthesia or neuromuscular blockade) (repeat due to question of suprapubic catheter)
• Endoscopy (repeat due to 2 years passing and unusual pain in abdomen intermittantly)
• Deep Brain Stimulator insertion (new surgery in talks)
• Spinal plain X-Ray series – June (6 months will have passed, usually done twice yearly)
  

Me wired and ready to go

On friday at 1:30 PM I went to SleepMed Digitrace to get wired for my 48 hour EEG. There we waited for about 15 minutes until the Clinical Manager came and said, there was no technician there that day but she didn’t want to cancel someone like me, what a great business runner. She took us into the EEG Setup room and began prepping me for the wiring, scrubbing spots on my head and so forth. Then she wired me up and wrapped my head in gauze. I then went home and the recording was started the minute i left the office. I had a few good events during the EEG but I doubt any valuable seizures. The event log is below.

Event Log

I decided NOT to trigger the switch on all of these events for some reason. Manual review is unfortunately necessary.

Key to symbols

[]‘s special note

()’s is description of event

<>’s is reason for creating the event notice and what the goal in seeing the event is.

Log Start

Day 1 (FRI)

2:44 PM – (driving home from facility, unusual spasms in spinal column) <were spasms of cerebral origin? if so can deep brain stimulation help?>

2:50 PM – (driving home from facility, unusual spasms in spinal column) <were spasms of cerebral origin? if so can deep brain stimulation help?>

2:52-2:55 PM – (driving home from facility, unusual spasms in spinal column and upper extremities, large amount of spasms some very strong) <were spasms of cerebral origin? if so can deep brain stimulation help?>

3:04 PM – (driving home from facility, unusual spasms in spinal column and neck, hyperextension of the neck did occur) <were spasms of cerebral origin? if so can deep brain stimulation help?>

Day 2 (SAT)

Approx 4:30 PM [look for sleep pattern initiation in EEG, do close inspection of the hour before entrance to the pattern and the hour after exit] (in bed on computer. absence seizures? sudden crash in energy, was not using sugar. “crashed out” into sleep.

Day 3 (SUN)

12:12 AM – (unusual spasms in neck, not hyperextensive, similar to chills, but produce pain.) <were spasms of cerebral origin? if so can deep brain stimulation help?>

4:00 AM – 1:00 PM – somewhere in time period the EEG system fails. batts must have died but level of batt was aprox 87 when i went to sleep.

It was otherwise an unexciting EEG session for my two year follow up and also to follow up some unusual absence seizure like episodes I was having during my neurodiagnostic testing a few weeks ago. The only thing I will warn you all of is EEG head wraps that are itchy and autism do NOT MIX. I did not sleep good for the last 48 hours because I spent most of the time slapping and scratching at my head. In the end I ended up having to semi-remove the wrapping from my forehead which was the itchiest. Today at 1:30 PM I was so glad to get that thing off my head.

I didn’t really mind the electrodes and tape, but once they wrapped it is when it got bad. Hence why I did so well with my 24 hour Holter EKG because I was able to slap the electrodes themselves or wiggle the wires as necessary. Maybe on my next EEG I will develop a way for me to not have my head wrapped, they could simply tape the pre-amp box to the back of my neck with some surgical tape. I don’t move around enough to warrant full wrapping.

I will get back to all of you with the results!

My new Anesthesia Machine (pranked over 100 people!)

A very surprising thing happened today. At 8:33 AM the doorbell rang, I looked out my window and saw a UPS truck, not our usual UPS truck, but a UPS 18 wheel semi-truck. I thought to myself; I didn’t order anything requiring UPS freight service. Mom was already at the door talking to the man, and he walked with her to the back of the truck and used a lift gate to bring the package down, it was a wooden crate about 6 feet tall and about 4.5 feet wide, he walked up the ramp with it on a dolly and then came into the house and to my room. He then said special delivery from Draeger medical custom build division. Description of package on the computer says “Warning: FDA regulated medical device inside, only deliver to above named party.” He showed his tablet computer to me and said is your name Alin S…? I pressed Yes on the tablet computer, and then it said please sign your signature on the screen, so I did and hit yes again. It beeped four times fast, and he took it out of my hands and said alright, that’s it, would you like some help opening the package? I said no thanks; we have it under control. Mom came into my room and said what is that? I said to her I don’t know; it came from General Electric Datex-Ohmeda division. She went downstairs and got a hammer and started prying out the nails on one of the sides until it was released. Mom slid the side of the crate off and said, what is this machine, I don’t know what it’s for. Are you sure they don’t have a wrong address and name? I said pull the machine out and let me see it. She rolled the machine out of the crate, and I was quick to notice that it was a Draeger FabiusGS second generation anesthesia machine with a Phillips intellivue MP90 ICU/Surgical monitoring system. I wondered why I got this machine. Mom then said, hold on there’s a few boxes in the other side of the crate. I said pull them out. She put one of them on my bed; it was very heavy. I looked at the label, and it read, “Ultane 300 doses.” I said, that’s the anesthetic agent. She said then you have 900 doses since there’s two more of those boxes in here. She pulled them out revealing one last large box which was much lighter; she said 100 Respiratory & Ventilator circuits. I then looked over the machine and saw an envelope sticking out of the upper drawer. I opened the envelope and inside was a letter from Stefan Draeger that was signed on the bottom and back by what seemed to be probably every person tat was involved in designing and making my own custom anesthesia machine. The letter read, “Dear, Alin an anesthesiologist from Lutheran General Hospital contacted Draeger on your behalf. I got their letter and decided I saw it fit to give you your own machine; this machine has been modified in many ways to work for you. It has been modified to be much safer, all you need to do is put in your weight, height, how long you’re going to be knocked out for, pour the amount of Ultane showing on the screen into the vaporizer and kick the start button. The machine shouldn’t harm you, and it automatically will shut off the anesthesia and do an oxygen flood to flush it out of your lungs if any of your vitals go outside of their limits. Once a month an anesthesiologist from the hospital will visit your house to program the machine, and replenish your Ultane supply and respiratory circuits along with gas tanks, those are pre-loaded in the machine, but you can find them in the tall doors on the rear if you need to access them, usage manual is in first drawer upper left. We thought you needed it so we sent it to you as a donation from Draeger, yours truly Stefan Draeger” I decided it was time to take it for a small test drive at 10:00 AM and had mom plug it in, then I powered it up and was greeted by a quite intuitive display on both the large patient monitor and the smaller anesthetic monitor, the large monitor beeped and then the text on the screen scrolled slowly across the computer as the machine spoke in a calm smooth female voice, connect ECG, respiratory, blood pressure, temperature, blood oxygen, and Bispectral index probes to machine and place on patient following instructions as needed, press the question mark key for detailed step by step instructions. I pressed the question button as I didn’t feel like reading the 800 page manual. Then the screen showed a picture of the anesthesia machine with the second drawer opened and spoke again “Open drawer labeled monitoring supplies,” I went ahead and opened the drawer and began hooking myself up, waveforms began to show on the monitor and the cacophony of beeping started. The machine spoke again and said set your weight, height, and required anesthesia time, be exact as possible to avoid underdose or overdose, overdose will result in an emergency oxygen flush. The anesthesia machine came with 100 masks and 100 intubation tubes. I decided to go ahead and have mom intubate me following the instructions as the machine gave them. Once intubated I hooked the tubes up to the tube in my throat and finished punching in my data. I decided to conk out for two hours. The machine then spoke and said place 120 ml of Ultane in the vaporizer, I went ahead and poured the Ultane in and then a large green start button flashed, I went ahead and pressed the button laying back in the bed; within ten seconds or so I began to swirl out, which is my own term for being on Ultane and my vision swirling and sounds echoing right before I conk out. In about three or so hours I woke up around 1:30 after the machine did its oxygen flush. Mom and I took a whole boat load of pictures, click on the picture above to see some of them. Both I and her are really excited I will have true literal control over my sleep!

Click above to see the gallery!