Alin's Site

I got my new blackberry yesterday and never reported on it. I got a video of that and a tour video of my “PICU” and a bunch of other videos to work on. my buddy sheila will be here in 2 hours to have some fun and then go to bed. I am burnt.

aside from the fact me and my pulmonary doctor are fighting over the breath rate setting. not much hapened yesterday.

Goodnight new phonecomes today!

Well yesterday was a mess, the nurse came and scared me while I was pulling a cup of water off the window sill to flush my suction machine and bam all over the bed and unfortunately into my blackberry it went. The blackberry still surprisingly functions but it has water spots and a crack under the screen, overall the phone is crapping out on me so I called Verizon and told them hey, my phone is on its last leg what should I do. They wanted 80 dollars to replace my Storm 1 with another Storm 1, I was like wait just one fricken minute here. Storm 2 costs how much?! The guy said 179 with a 2 year activation, big deal. So I went ahead and bought the new phone and put it on my credit card. I got some photos of my sick blackberry that I will post along with photos and unboxing video of my new one, it will all be in a combined set.

I am still working on processing all the photos from the hospital and I GOT HALF OF THE AMBULANCE RIDE!!! The first half which was the most exciting seeing the hospital recede into the distance with some funny talk is there, the cameras battery quit on me as we approached Palatine. I have some video that dad took of the ambulance pulling in.

This post is REALLY late as me and my nurse Sheila are having fun and decided to probably pull an all nighter… whateva

Merry Christmas Snowflakes

Yeesh, my god! I really am falling behind on the blog posts right now.

Yesterday was a very dead quiet christmas for us, we did not do much aside from lay around the house and tell stories by the fireplace… err, oxygen concentrator and ventilator (and heated humidifier). What a heart… err, lung warming combination. Okay, enough on the bad humor, whateva.

I got some money to put in my bank for savings towards college, I want to do 4 things, respiratory therapy, pediatric nuclear medicine and radiology and rehab technology. thats 4, 2 year associates degrees.

Last night I had a cute nurse who just recently had a baby, congrats. With her help I went to town in the bath room taking a royal shower and shave, and by royal shave I mean shaved my head my belly and all my usual areas and my armpits that haven’t been shaved in 7 weeks. Not exactly a picture you want to think about… OKAY! Lets go up a few lines back to the telling stories by the oxygen concentrator, ventilator, and heated humidifier shall we? indeed we shall.

Anywho, this ends this christmas post.

Wow I am really tired, I blacked out and lost control of my body several times tonight, atonic seizures and one of them resulted in me hitting my head. My nurse an I laughed once I came to again and said at the same time “Incident report”

Jiminy Christmas, freaking 2:45 AM Good freaking night! I wonder what prezzies I will get “tomorrow”

Suction… Bed… GOODNIGHT.

Well things are going back to normal, sort of, for now. Medical code will be changed, location too.

All in all i am too tired to do it now, 2:33 AM forget it.

Goodnight all, my night nurse tired me out.

One more suction and then bed.

I am home ,was home after a fun ambulance ride, arrived here around 2:00 PM. Very few photos were taken, my camera decided to piss me off big time and corrupt the video files!!! ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I got absolutely AWESOME nurses. two really cute ones! And they both love being with me. Awesome! I am having fun playing games with my PM nurse tonight, she will be back tomorrow night. Perfect for my bad sleep patterns she is!

Me and christine snuggle up one last time before I go home

Nancy and Marion did final discharge preparations yesterday. We are ready to board the ambulance at 11:30 AM approximately today. I will hopefully video tape the entire journey. There will be a huge amount of photos being taken at home and in my room of all of the new equipment. And videos, there will be approximately several GIGABYTES worth of video going up on Youtube over the next week.

I will be settling into home for the next few days so do not expect instant replies to E-Mails, expect delays. Also expect continued delays on photos and videos.

No other news.

I got a discharge party and a poster with a lot of the peoples signatures and a visit from United Airlines pilots yesterday! Way cool! More photos may follow from this. As always Christine one of my best friends in RT signed my poster and did the ol’ snuggle up by the vent for a picture, screw fire places.

All photos from ambulance will go to their gallery and photos from home will go to home gallery.

Click Above for photos

Marietta and my ventilator. This picture makes the vent look huge

Alright, so some of you ask me how my swallow study went. Apparently according to the speech language pathologist who administered the test and generated the report I can eat just about anything with some modifications like frequent drinks to flush it out of my throat and vocal cords.

Well I beg to disagree and say that the test may have produced false results. The main reason I think the results may have been falsely positive is that my muscle control changes day-to-day and rarely do I have a GREAT day for swallowing control. It is to my belief that I was in one of those great days, therefore we are going to continue to apply the same restrictions on oral feeding as we did before the tracheostomy and make more restrictive controls based on Dynamic Suction Analysis (DSA) which put simply is the process of checking for the color of the food in the suction line every minute for about 5 minutes after feeding, if clear then there was no aspiration, if colored there was aspiration and the colored secretions need to be measured to measure the amount of penetration. Since I do not own a fluoroscope like I would like to it is impossible for me to analyze swallowing controls radiologically and accurately. but DSA works well enough for chronic continuous analysis.

Anyways today we continued preparations to go home including packing things up and hoarding supplies.

I also shot a few more photos today including one that made an optical illusion with Marietta one of my RTs that makes my little tiny 14.5 pound 3 inch thick 10 inch wide 13 inch long ventilator look like a giant beastly ventilator like that you would find in the ICU. Then again the LTV is a direct duplication in “Most” terms of the Maquet Servo I Intensive Care unit that I was hooked up to, but due to my hypersensitive autism and also intense knowledge of the machines I can tell the difference between a turbine driven system and a gas driven system and one with better software. I plan to get myself a Maquet Servo at some point!

I also figured that I can use a rubber back scratcher to shut up my monitor alarms and do other cool things on the monitor. Suhweet, too bad I did not figure this out back in the first day or two I was in the hospital or at least in the first two to three weeks. Oh well!

Click above for photos

Me and christine in her new scrubs

I fell asleep before I could push the button on this one so now it is Sunday.

Yesterday, saturday Christina my “girlfriend” from RT came to visit me again, she got brand new scrubs and is looking great in them so I shot some photos.

As you all know by now Kira from the room I am in got discharged, I got a few photos of her and her dad but they do not wish to be further identified and therefore I will respect that. But I have taken over her job of not shutting up at all during the day until my cuff is inflated for night time ventilation.

As you know I discharge tuesday via ambulance.

We are also in talks of mounting a humidifier on my chair for my transport ventilator as HME’s do not retain heat enough for me to be productive with one, nor enough moisture. I can stand maybe 30 minutes on one but other than that forget about it.

There is a lot of equipment being delivered tomorrow. And there will be more deliveries as we straighten this humidifier thing out.

We also have yet to get this lockdown business for my new chair straight