Alin's Site

Me with my big green schwag bag!

Click the photo above to view more photos

Yesterday I went to ATIA 2009 Chicago which was the first time that the ATIA trade show was here. It was in the same place that the Abilities Expo was and again they came to Chicago for the first time. Abilities Expo will be back next year, yay! But I hope ATIA comes back next year too!  I had a lot of fun, this time mom and Jeff went with me as dad was at work, oh well, maybe next year he can come! Anyway me mom and Jeff had a lot of fun. Me and Jeff spent a lot of time at the Tobii ATI booth examining and fiddling with the Tobii C12 which will be my communication device post tracheostomy hopefully. It is a very highly advanced device for patients with very limited to non existent speech ability, I fall under very limited. Anyway my computer CORRUPTED 50% OF THE PHOTOS

I took a video of me using the device and doing a short demo and some of my questions, you can watch it below!

I had a lot of fun at ATIA and hope they come back again next year!

Orders List

• Tracheostomy Final Pre-Op <Monday Nov 9 2:00 PM>
• Cardiac Monitor <IN PROGRESS>
• ETCO2 Monitor <PENDING FIGHT WITH INSURANCE… YAY!)
• New Wheelchair <PEND DELIVERY>

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.

• Glasses <WAIT INSURANCE / MONEY>
• Pacemaker / ICD <PENDING ORDER>
• Spinal X-Ray Series <REORDERED FEB 2010>
• Pulmonary Functions Test <REORDERED FEB 2010>
• Breast surgery visit <PENDING SCHEDULING>
• Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis. (INACTIVE) (OP / IP at doctors discretion) <PEND SCHEDULING>
• Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (OP) <INACTIVE>[WAIT FOR BETTER INSURANCE]
• Voiding Cystourethrogram / Urodynamics – CMG <WAIT SCHEDULING>
• ABGs draw (IP) <WAIT SCHEDULING>

I got an E-Mail this morning from the founder of FeedBlitz, Phil Hollows who told me how to recover my news feed. He then helped manually recover all of the “lost” subscribers and therefore the newsletter should be functioning as healthy as ever! If there are any problems you know how to contact me. The form on my website has been updated to show the status as UP again. Phil Hollows is a great guy and FeedBlitz.com is a great company, if you are a blogger should check them out!

In other news I am really hoping my good friend Rocky Guido renews the server otherwise my website could be facing some serious downtime, and some serious money crunch if I have to arrange to finance the entire renewal on my own. I don’t even have enough to pay for half, I would have to get a credit card to pay for it and then pay it off and ugh I don’t like using credit, no one does.

10/28/09 = did not hook up was up till 4 AM working on broken system

Well well well, looks like some users complained about the BCCs showing in their headers, for some reason my web host does not allow black carbon copies and encodes it into the header, reason… security, SiteGround has a big problem with SPAM. Anywho I think I may have worked a solution out that might put a lot of load on the server but oh well. In other news it is 4 AM here and I am still not going to sleep for some time due to all this crap.

FeedBlitz, if you are reading this, please, do me a favor. Give me my free newsletter that I was entitled to but lost due to technical issues outside of my control.

Talk about a Royal Flush (Royal pain in the ASS)

P.S some of you may be wondering “is my E-Mail address readable by other people” for now sadly the answer is yes. up to 10 other people will have access to your E-Mail address. please advise me if you want to opt out (unsubscribe) from this list until I can get a better system implemented.

Goodnight for the final time, any problem reports leave them in my box and i will get to them when I wake up…

10/25/09=got new oximeter, was not able to pull data before they took mine away

10/26/09=getting used to new oximeter software

10/27/09=finally set it up

10/28/09=pending

Just as stated above we (my blog) is in complete turmoil for a E-Mail service to notify people that new news is available. Without one a lot of people are left in the dark as they either A. don’t have the time to come to my website or B. just don’t want to or C. can’t remember where to go all the time, whatever reason people deserve easy and ready access to my news, and without an E-Mail provider there is no EASY and SIMPLE and READY access to my news.

Feedblitz is broken big time, and this time I am going to be taking the steering wheel here, at least temporarily, possibly permanently. This new system is very much like FeedBlitz only it has no ads and I run it completely off this server. It may encounter failures and hiccups as I test it and tweak it to hopefully one day perform as well as FeedBlitz did. Now should FeedBlitz welcome me back aboard this system will swiftly be de-comissioned as FeedBlitz was an awesome service.

P.S if you get a duplicate E-Mail it means I duplicated your E-Mail in the import, contact me directly and I will fix it, again this system WILL have kinks in it, I EXPECT IT TO.

Anyways here we go, this is the first E-Mailed newsletter on the new system, heres a big fireworks for the Sherver!

Good luck my metal and silicone comrade.

And goodnight world!

Dr Gabriel Aljadeff Pulmonary

Today we went to Dr. Aljadeff my pulmonary specialist. This was the big visit about the tracheostomy and the ventilator and the whole pulmonary care  agenda. We have declared a total loss in airway clearance, first “The Vest” was declared as unsuitable due to problems with vibration and the Baclofen Pump. Then the Cough Assist after many months of inefficiency was declared a loss. After that we declared a lack of options and supportive care along with intensive monitoring and analysis. A sleep study was done October 5th which resulted to be normal. Pulmonary functions testing more recent showed severe problems. Although ventilatory I am relatively okay he might start me on a ventilator at night to help mobilize my lungs and give me better oxygenation at night that is more stable, he would use AV / BU mode which is Assist Ventilation and Back Up, how Assist Ventilation works is the patient takes one hypo ventilatory breath and the ventilator sees it and gives more air, then pulls more air when exhaling. This is considered a Spontaneous Ventilator Control (SVC) program. Then there is BU protocol, the ventilator “Listens” via pressure sensors to make sure I am breathing with it, if I am not it will sound an alarm and begin breathing for me. Overall I am not afraid of the Tracheostomy its self, what gives me a slight worry is the continuous maintenance and the thoughts of the pain of changing the Tracheostomy tube every week, if it’s as painful as my G-Tube changes, damn it! If not then fine whatever. One big change many people are afraid of and I am not is the Assistive Technology AUGCOM perspective, I am going to ATIA this week, little did I know I would be going not only for fun and education, but to shop for a device for myself!

The Tracheostomy is a good news bad news blend, in good news it will help me breathe easier and increase quality of life, no more coughing all the time, possibly better sleep, the list gors on. The only bad news is more limited communication and constant maintenance.

In other GREAT NEWS. My powerchair has been APPROVED minus the elevate system but we are going to see if we can’t sneak that under the table.

Orders List

• Tracheostomy Final Pre-Op <AWAIT FINAL SCHEDULING>
• Cardiac Monitor <IN PROGRESS>
• ETCO2 Monitor <PENDING FIGHT WITH INSURANCE… YAY!)

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.

• Pulmonary appointment <WAIT SCHEDULING>
• Glasses <WAIT INSURANCE / MONEY>
• Endoscopy (ulcer in stomach possibly) <Pending requisition>
• New Wheelchair <PEND INSURANCE APPROVAL>
• Pacemaker / ICD <PENDING ORDER>
• Tracheostomy <PENDING ORDER>
• Spinal X-Ray Series <REORDERED FEB 2010>
• Pulmonary Functions Test <REORDERED FEB 2010>
• Breast surgery visit <PENDING SCHEDULING>
• Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis. (INACTIVE) (OP / IP at doctors discretion) <PEND SCHEDULING>
• Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (OP) <INACTIVE>[WAIT FOR BETTER INSURANCE]
• Voiding Cystourethrogram / Urodynamics – CMG <WAIT SCHEDULING>
• ABGs draw (IP) <WAIT SCHEDULING>

Me drinking my 7 dollar drink before I knew it cost that much... WHAAAAAAAAAAT!

Last night a few hours after PHUN Day me and dad went to Grandma Lillian’s (his mother’s) 74th birthday party at Edelweiss Restaurant downtown. It was not too long a drive. As you know I don’t eat, I drink so I got a virgin Bloody Mary while dad got some sausage. They had The Johnny Wagner Band there playing live Polkas and whatnot. When you go in this place you seem to step into Germany for a while. Thankfully my brain’s time zone did not get messed up this time! Enjoy the photos and video from this event. There is more that the photos and video speak than I can speak in this blog post. So Click the photo above for photos and play the video below!

Orders List

• Pulmonary office visit <Tomorrow at 2:40 PM)
• Cardiac Monitor <IN PROGRESS>
• ETCO2 Monitor <PENDING FIGHT WITH INSURANCE… YAY!)

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.

• Pulmonary appointment <WAIT SCHEDULING>
• Glasses <WAIT INSURANCE / MONEY>
• Endoscopy (ulcer in stomach possibly) <Pending requisition>
• New Wheelchair <PEND INSURANCE APPROVAL>
• Pacemaker / ICD <PENDING ORDER>
• Tracheostomy <PENDING ORDER>
• Spinal X-Ray Series <REORDERED FEB 2010>
• Pulmonary Functions Test <REORDERED FEB 2010>
• Breast surgery visit <PENDING SCHEDULING>
• Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis. (INACTIVE) (OP / IP at doctors discretion) <PEND SCHEDULING>
• Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (OP) <INACTIVE>[WAIT FOR BETTER INSURANCE]
• Voiding Cystourethrogram / Urodynamics – CMG <WAIT SCHEDULING>
• ABGs draw (IP) <WAIT SCHEDULING>

The soundboard and rack ready to be cleaned

Yesterday was PHUN (Practical Harmony of Unity Needs) Day, which is pretty much a work day at the church that happens every month or so. You can look a bit more as to exactly what it is at the church website. People were washing windows, cleaning the gutters, trimming plants and changing lightbulbs. I had the job of working on the sound equipment. I went ahead and completely unplugged everything and redid the wiring so it’s cleaner and safer and easier to work with. I also cleaned all of the equipment and the connectors to a like new sparkle. No more weird food droppings on the Behringer board!

Click for photos and funnies.

There was an oximetry exception. And a partial

10/23/09=No Data – Hooked up forgot to hit record

10/24/09=Worthless data – Sensor Fail (bunch of the data said I desatted to 30%, BS sensor… I’d be dead!) <Sensor Changed>

I passed out I was so tired last night and never recorded anything for 10/22/09 but I am already hooked up as of now and just have to remember to hit the record button.

I am resuming oximetry reports. I have posted the 10/21/2009 report