Burnt up trach site

We Arrived at the hospital at 6:14 am

We went into registration at 6:20ish and got me registered for surgery. After that we went right to pre-op and started the pre-op process at ambulatory surgery for the first time at 6:41 not inpatient this time. That’s a first besides that weird endoscopy. thank god for my iPod in pre-op area. Unlike the inpatient O.R this outpatient thing is sprawling with screaming little kids, does not mix with autism! In the pre-op I met a really cute anesthesiologist who loved my humor and had fun with me. At 7:45 I went into the O.R and met Dr. Walner and the anesthesiologist who started the Nitrous and Sevoflurane it felt so good she used a lower flow and it took a minute for me to fall out yet I got high within seconds, swirling vision echoing sounds! We had fun giggling and talking and joking till I crashed out then I was out of the O.R at 8:20 and woke up in post-op at 8:50 I took a lot of morphine to get my pain under control and then finally at 9:55 we packed me up to go home and got my IV taken out. We stopped for a quick snack cause my sugar was low at around 10:30 And we had a leisurely drive from there and got home around 11:00. I am still pretty tired from being up at 5:00 AM and stuffs. But I am doing good, click above for another photo of the site. It is so much better!

countdown clcok for trach revision

I am quite excited about tomorrow! I get my trach fixed and as a lot of you know I love how the Sevoflurane anesthetic gas affects me, swirling vision, echoing sounds and really high. It feels really good for me.

For the surgeon, I have one thing.

Identify the problem, FIX IT, Step two Identify another problem, FIX IT, step three, repeat steps one and two until its all FIXED.

And a youtube clip to go with the anesthesia theme!

Sevo’s on, Nitrous too!

CODE RED HIGH ACTIVATED

A code red status has been declared at 6:30 by me and my nurse and my ENT Dr. Walner. Since we have not had a Code Red for a while or any code changes aside from Code Blue we are going to have a Code Review after this post.

The Code Red has been declared since urgent surgery to revision and correct my tracheostomy site, the leaking is severe and there is extra tissue around a lot of the site. The cuff on my trach tube will no longer retain air and therefore either has a leak or has ruptured! This Code Red will activate a countdown clock when we are scheduled for a time definite O.R Surgery time THIS WEDNESDAY OR THURSDAY. IT IS UNKNOWN IF I WILL NEED TO STAY OVERNIGHT.

Code Review

CODE GREEN - This is probably a code we will NEVER see again. Code green used to be used when all was totally normal and absolutely no monitoring or at home procedures were needed. Since I am almost ALWAYS under some sort of monitoring and procedure this code is effectively considered retired and not our “Normal” code

CODE YELLOW - This is our “Normal” medical code. You WANT to see code yellow updates on the blog and site. Code yellow means standard monitoring and procedure is being followed and NO TYPE OF HIGH PRIORITY DOCTORS VISIT OR SURGERY IS SCHEDULED. ROUTINE DOCTOR VISITS MAY BE ASSIGNED A CODE RED TAG IF THEIR PRIORITY WARRANTS.

CODE RED - code red is a very difficult to use code. I mainly change to code red when a HIGH PRIORITY DOCTORS VISIT IS MADE and or when a surgery is PRIORITY SCHEDULED. CODE RED IS NOT FOR LIFE THREATENING EMERGENCIES AND OR EMERGENCIES OF NATURE WITH LESS THAN 24 HOURS TO SURGERY OR VISIT. i.e The Baclofen Pump story and its second surgery. In the case of The Baclofen Pump story that occurred within 24-48 hours and would be a CODE RED, the second surgery should have been but was not coded as a CODE BLUE.

CODE BLUE - code blue is also a difficult code to use. it is EXCLUSIVELY reserved for EXTREMELY HIGH PRIORITY surgeries and or E.R visits or other things that require immediate attention (under 24 hours) a previous example of a code blue situation was the Second Emergency Baclofen Pump Surgery. It is also used obviously in life threatening situations.

Code Red will also have a suffix attached to it to signify priority, Code Red HIGH is for high priority and Code Red LOW is for something like right now with the cardiac pulmonary mess. No other codes will use a suffix

Slaving over the god blessed computers

This is me working on TWO computers and THREE hard drives, of course over the last month I have MAXED OUT my credit card on purchasing hard drives to keep this god blessed piece of trash computer running, because it literally KILLS the drives somehow to a point they are totally inoperable. I have one 320GB Apple Drive which is a DECLARED DEATH OF HARDWARE and then I am running on a 60GB Apple drive right now that is on its way out, and then I was running on a 250GB Western Digital Passport which kicked the bucket but I threw out stupidly. Anywho, I sent a fuming voicemail to my account manager at CDW and I also sent an E-Mail, also pretty fuming. Here it is quote for quote, anonymized for my and his protection. Riot anyone? I am really about to throw this computer under the tires of the van as it is backing up so that it is completely obliterated so that I can get a new one, but I am not, I am trying to take the honest path.

P.S IF I am not online don’t fret, I will be online from my BlackBerry phone on and off throughout the day IF the computer is totally blown, thankfully I have the secondary “Crash Cart” laptop.

From: Alin S

Subject: Got my voicemail?

Date: April 25, 2010 2:52:14 AM CDT

To: myaccountrepsname@cdw.com

I finally got the hard drive running on the living room iMac, absolutely UNACCEPTABLE. The internal hard drive bay on the laptop is USELESS. Reinstalled to 10.5 FRESH FORMATTED DRIVE and then upgraded to 10.6 FRESH and used migration assist to bring in my apps documents photos and settings, I cannot be without those. This obviously says theres a fault with the MACHINE as I booted this hard drive on my second machine perfectly FINE. The kernel or the EFI of the machine is DAMAGED or the MOTHERBOARD is FAILED, honestly I think its a combination.

The machine has failed WAY More than 4 times (in the last week) and I can have at least 4 people sign documents vouching that they under penalty of perjury have witnessed failure of the machine to a point of total inoperability until reinstall, restore, OR use of the iMac in tonights case. I will try working on the god blessed laptop tomorrow morning but as you see from this message it is two freaking forty nine in the morning and I can’t sleep without knowing that SOME machine has my hard drive working on it. I use this as my ONLY connection to the outside world, otherwise i am nearly totally isolated at home.

PLEASE, I am begging you at this point arrange an EXCHANGE of this machine for a NEW machine this machine is a LEMON.



Shiley DCT Trach Tube

As you may have heard in the news there was a big recall on Shiley Disposible Cannula Tracheostomy Tubes (DCT) I on Thursday got the letter and yelled to my nurse Kelly “GET EVERY SINGLE TRACH UP HERE IN FRONT OF ME NOW!!!” And she went running around the house and gathered around 9 trach tubes. Seriously, my mom and whoever has some sort of fetish for ordering trach tubes really needs to cut it out! 9 Freakin trachs? I could intubate every one of my nurses endotracheally with all of these, though I would need to make them longer somehow, whatever. Anyhow she brought back the trachs and piled them all in my lap and I went through all of them saying “Clear, Clear, Clear” and so on. Until we went through all 9 freakin trach tubes.

Oh and I had to restore my computer for the 5th time this week! I HATE THIS!

HandWave G1 Prototype

Shown above is a censored image showing a communication device that works based on simple hand movements over a sensor, gestures and individual finger movement may be recognized by the device but the creators still have yet to release those details. This representation the device outputs written text and colored lamps to assist its user in communicating. The creators have a concept for a new next generation device that will be sub 500 dollars in cost easily circumventing the excessive cost of other devices like Dynavox and Prentke-Romich Devices and other major AAC players. This device would be easier to produce, easier to get reimbursement for which means the world of easy to use AAC will be open for more people. The next generation device will use an LCD screen paired with the same basic technology underlying including the sensor but no longer the text and lamps are used, instead replaced by a high tech low cost LCD system that will open much more possibilities of communication. This product cant become a reality without you voting HERE

voting takes a minute or two just register as “friends of MIT” and fill out the form, it only takes about 3 minutes to do the whole process even with CP and spasms.

In other news my Mac is failing and the serial number’s been “Branded” like a car title for causing chronic hard drive failures. So I am seeking an exchange of the unit after it being suspect for murdering 2 hard drives CONFIRMED hardware death of some sort and this one that i am running on is on the fritz currently. S0 CDW will be calling me tomorrow hopefully

Back to square damn one!

⁄

Day 3, from a good angle this time

At least when compared side to side in iPhoto the more recent one looks better, see?

January 17th and now, side by side! (LEFT = OLD RIGHT = NEW)

The recent one at least looks like the site is TRYING to close around it whereas the old one looked like a lazy site, we notice blueish skin color in the old image and a nice red pink in the new image, this is a sign of increased blood flow whereas in the old image it was a sign of blood desaturation there. We also notice lateral growth at the new site, not sure if its more granulation tissue or not; however, it might be closing tissue, you do not see that on the old image! So this new imaging set shows some hope to us!

Again to all of you, this cost my insurance $2,000 per image that I take. There is a total of 34 images in the Tracheostomy Imaging Archive and it will grow faster now, right now the insurance company has to pay me $64,000 for all the “Advanced Imaging” hhaaha!

mount mounted

Moving on we got a new METAL version of my ventilator mount! I have not adjusted my headrest since my chair came back from getting the VPU (Ventilator Power Unit) hooked up that works like an APU (Auxiliary Power Unit) for the ventilator only and powers it off the chair, apparently some MOOSE at the tech center literally took a WRENCH or something to my headrest tightening screw, I had to use freakin VICE grips. All in all I had fun for the hour or so I monked with the new mount; however, it turns out it needs some further modification to be made to work properly. But, those modifications should be done sometime this week, See the gallery above for some fun. We have reverted to the old woodie.

Don’t forget all the photos are clickable!

There are a load of grammar fixes for the entire site coming. It will roll out over the next few months to the entire site!

Trach still messed up!!!

I really look forward to May 14th to the surgery to get my Trach fixed, it looks really messed up don’t it!?

Anyway I have stats for both Alinssite and Disabledplanet here, really late, sorry.

daily_usage_201003as

hourly_usage_201003as

ctry_usage_201003dp

Uh-Oh back to the big hole. CRAP!

President Obama reports on my trach… Okay nevermind sorry he won’t ever get involved in my trach or its site, therefore I myself will be reporting on this.

The trach site looks okayish but we are back to that big hole there again. I still cannot inflate my cuff so a surgical O.R visit is scheduled for May 14, which is the earliest surgery visit that they can do. This will be a full fledged trach change and bronchoscopy and endotracheal bronchoscopy to find what went wrong and where. They are also going to clean out my respiratory system. I leak like mad from my trach site again and need to pack gauze carefully in a specific spot, don’t need two pieces like I did initially though so that’s good!

A message and note to Kira and her mom, see my new trach collars here! They are much smaller and more controllable than the big dale ties!

My green tongue! Note, HME and tight harness!

Today I went for a good hike with Kelly, we went to my bank to deposit some checks and then stopped at a cool Exotic Car Share place that works like timeshares, sure we didn’t get a car but we got some pretty sweet photos of me with the cars and photos of the cars! Awesome orange gull wing lamborghini there! I WANT IT! Then we went to the dollar and bought some junk food but I already ate most of mine… Ooops, oh well. Earlier before this post I had a blood sugar crash argh! We then hit Dairy Queen and I got a lemon lime slushee, note the green tongue, there we met my psychologist from elementary school and had a great time at Dairy Queen with her. After that we hit Popeyes to get some dinner. Worst of all things, I freaking didn’t remember my stupid PIN so they had to mail me a new one that will here eventally