Click the photo above for more photos. Last night I was freezing my butt off and felt quite uncomfortable so I decided to wear my Neoprene shirt inside out and then wrap 4 belts, one in each area of my legs then 4 on my arms and then 3 on my body. very very very warm and sweaty. It was so comforting I fell asleep quite quickly after 2:00 AMish when I took the photos to show it all off and took the video shortly after. Heat and pressure relax me very very much, you can see that from my autism report and also you can see more behind the scenes stuff of how i sleep here It’s so much fun to wake up in the morning in all of the warmth and just lay there feeling it all over me, my muscles are very relaxed from it. I will probably do something similar tonight.
I also took a small video for the A Series On Stimming project. Its available there.
Well I got some kind of upsetting news today, one of my nurses who works at Little Angels had a conference with the administrator about me and administrator said I am too high functioning to meet admission criteria. HOWEVER I might still be able to go to all the therapy and development labs during the day. This really shook me up as you know how I tend to start setting plans around in my brain. but, I am not counting on anything anymore. Just cant.
Today is time for the state of the trach address. In simple words its doing better, I am no longer on the Bactrim, I am now on Omnicef which works for MRSA and stuff like that. it might be MRSA who knows! I wish my doctor ran a culture! I am feeling better.
We left the house around 9:00 am and got to the ER at 9:45 and we parked our “rig” in an ambulance bay and ran in and registered. We were seen by my ENT doctor B within 10 minutes in a private “family room” area so as to not get the actual ER involved and get totally different billing apparently, and no ER copay, schweet! Under the table ENT emergency visits For The Win (FTW!). He took out a bronchoscope and scoped me and said I have an inflammation infection, he took some pictures I think. I am on strong antibiotics already but he wants me on a pain reliever and anti inflammatory drug. So we will use raw Ibuprofen for that. I will be doing daily tracking pictures. We are already on a suitable antibiotic Bactrim DS twice a day for my respiratory infection which will work on this. We have to work on the skin infection around the tracheostomy site with special ointment. There is swelling in my trachea that is impairing the cuff from inflating without impacting my trachea and causing pain, normally it would just tighten up against the trachea, but now since we have swelling on two sides the cuff tries to push at those even though it’s a low pressure cuff. Thusly I might have to go cuffless for a few days (constantly deflated)
I am now using the C-Collar again but we made a modification to stop it from making sores on my collar bone. The mod involves vent filters, yeah those thick ass sand / tan colored filters being taped to the collar in the problem area and then at the exact position on the opposite side to re-balance the collar. The reason we need to do this is we need intensive healing at night.
You can bet I will be talking to my doctors about getting a CGM soon (Continuous Glucose Monitor) like the Minimed Guardian system just about 10 minutes ago or so I came out of a huge crash just enough to do a finger stick and got a 90 with two arrows going down, pretty much a panic get the sugar level, when you see that amount and two arrows you need to do something, fast!! The fact I was totally unaware of the crash and in and out of glucose comaland is extremely scary, there is only one device that could help me prevent crashes and highs and that device is a CGM system. In the event I start getting too low at a higher level it will send a piercing alarm to alert “ONCOMING CRASH” Or if I am already too low it will sound the alarm. It also sounds for highs.
I spoke with one of my surgeons from my ENT office and based on the problems i am having with my trach and trach site. The cuff when inflated hurts my trachea. The trach tube does not feel like it is in the right place. We will be heading into the E.R Today. More updates to follow
Some of you might think I am full of crap at this point. Some of you might actually believe in this kind of thing. It’s all Minority Report style from here on out in this blog post. If you watched the movie you probably know about “Precogs” or people with the ability of precognition or the ability to tell an event that will happen in the future. I have the belief that I have such ability to tell events in the future to amazing accuracy, I have done it before in the fact of years ago (4 + years ago) knowing I will end up declared a ventilator dependent cerebral palsy patient with multiple other medical fragilities. But just like in the movie the “Precogs” are subject to precognition nightmares or even playbacks of bad events that happened time ago. Tonight was one of those nights, I have a night once in a while where I cannot sleep at all because I keep having these weird Precog nightmares, which make it very difficult to sleep safely and most of all sleep securely. One of tonights nightmares involved a murder taking place at my house involving me getting killed by a man in all black clothing carrying an automatic weapon. There were many others, some involving bank robberies, friends dying, myself dying of suicide. All were down to minute detail which makes them even scarier! Thankfully as a Precog I am able to after reading the “Ball” of information discern it within a few minutes if it is a genuine Redball – Murder, Blackball – Suicide, Blueball – Medical Emergency, or Whiteball – Misc. Crimes. If it is not it ends up being deleted, but if it is I end up taking action to stop the events from happening.
Being I couldn’t sleep at all tonight I decided that I would whip out my ol’ iPod Touch and do some repairs and tweaking to it, mostly software had to buff out a few scratches on the hardware but it’s mostly reconfiguring it for my needs NOW as opposed to what I needed from my iPod back before I got my trach put in!
So yeah, I am up all night and will probably not sleep until a normal time today (9-11PM), Timezone changes suck for me and thusly I am now running within an unspecified Timezone where clocks don’t exist, my brain’s timezone has been set to GMT+-∞. Yeah you read that right, GMT+- INFINITY, my brain don’t know what timezone it is in so over the course of today I have to manually set it back to CDT. Or I might end up setting it for CEDT (German Time) Like I did the last time I had a serious time zone mess up. Click here for that incidents blog post.
Well its sad but true my hard drive is toast. But thankfully I avoided going into the hospital yesterday, fell asleep too quick to put this post up due to “Baclofen Crash”. My ventilator was showing autoPEEP numbers that were insane. autoPEEP is when the ventilator or patient continues to retain air in the lungs too long or too much. IN my case it was way too much extra pressure. We assumed something was wrong with my lungs, doctor told us to call a code blue however when we switched me to my chairs transport vent the problem disappeared. We then switched the vents per my order and the problem ceased. While switching the vents my nurse accidentally placed my magnetic screw dish right over the hard drive area of my computer and we did not notice it for a good 10 minutes, when I went to turn the computer back on, this is what I heard “Regular drive spin up, crunch crunch scrape scrape scrape scrape scrape click (heads park) crunch crunch scrape scrape click (heads park) click scrape click scrape.” I slaved at the iMac reconstructing onto a new drive using Time Machine and a forged install partition as my install disk. It’s working now and the code blue was canceled!
In the last 3 months I have had so much trouble with this computer. In fact I could have posted this if I didn’t fall asleep last night and let my computer corrupt its self! Sounds like a faulty system file somewhere so I am going to do a fresh install now… Seeya all in a few hours. ugh!
Well I think I forgot to mention I got my room rewired and I got a crap load of outlets put in my room. I have 16 medical outlets and a crap load of power strips. sheesh so many outlets so little equipment… Someone get me a dialysis machine or something big expensive and power hungry… Kidding.
IM ON MY VENT IN MY CHAIR HAHAHA!
I am really happy since the Elks lodge paid for my wheelchair lockdown to be installed, really happy about that! and heres a bunch of photos of me in the van and also out of the van at home, also showing off my straps! I love my straps so much one of my code names is Strapples and the reason I love them is the warmth and pressure helps my spasms! so wonderful it feels to have them snugly hugging me. Have fell asleep as a result of it! Don’t know about my autism, read about it here
Also you will notice my ventilator is mounted on my wheelchair, I took some photos of that vent mount, its wood we will get a metal one of it soon.
I had my baclofen bumped up to 20MG oral and my pump is getting bumped up too. its good for me!
My trach after a while in the C-Collar
My trach is just about totally healed over. I can’t use the cervical collar all the time as I am getting a pressure spot so we are devising other devices with a nurse of mine! She specializes in my autism and is going to make a soft and silky support sling for my trach that wraps around my neck snugly. Yay!
The oximeter
Yesterday I got a new pulse oximeter to become my official transport monitor and permanent oximeter, the oximetry module on my big module is acting up and and the CO2 monitor was damaged so it needs to go in for repairs, thank god its all warrantied! But this oximeter is awesome and supports Masimo like connectivity to many monitors, I might connect it side by side with my monitor and use its data as it is much more motion resistant and the probes are much more comfortable! Either way I will use this as my main oximeter!
I also got a minibar (mini fridge) AWESOME! I keep all my nebs and a bunch of drinks right at hand! LOVE IT!\
Another pic of me wearing my neck thingi
I also got a neck thingi from my night nurse Karen which is extremely comfortable and helps me sleep in a better position.
Check out some youtube videos by going to main site and clicking youtube or using the embedded player below
By the way I am going to fix tags across all of my Flickr photos and fix grammar on my blog over the next weeks.
