Alin's Site

OK OK OK, I have had many complaints that people are tired of looking at my trach site here on my blog. Unfortunately I have another infection and I waited 5 days before I would post, if it cleared out before then I wouldn’t post it, but it’s still not cleared out. We are working with my doctor to see what my next action is, there are still 2 days left of antibiotic on the course and it could suddenly release and become cured. We might have to do an oral antibiotic or a different ointment at worst we might have to do a skin scrape sample. I will keep people up to date.

Two days ago I broke out my new Plantronics Voyager Pro+ Bluetooh Headset out of its package, you may remember I had a deceased Plantronics Voyager 510, loved that headset and I LOVE THIS HEADSET! In the interim between that headset I was using a Motorola H790 which was Okay but the stupid plastic clear ear piece kept breaking off, UGH! So now I have this headset and its great!!! Goodbye Moto!

Oh and did you hear the part in the video where it mentioned that I might be the first ever Male Atypical Rett patient? yeah I might be diagnosed with Rett Syndrome in the coming months and that will make me truly a piece of living history since no male has survived as long as I have with a faulty or non functional MeCP2 gene

 The day before yesterday I got an awesome gift from MyBigMouth unfortunately it is not what she expected, what I got was ONE cuff and they sell them in pairs and she ordered mine in pink leather with purple lambskin interior. Oh and she is also ordering me a collar with my name on it in black with purple lambskin interior. It smells so good, feels heavenly. Head over to CollarFactory to make some stuff for yourself.

As some of you may know I can get around pretty good, there was an unusual racket going on out the front door. I instinctively wanted to check out what was going on, at the time I had my Blue PVC raincoat AND my vest on cause I paused my treatment to check what was going on. Well for some reason or another the little batthroom style lock on the knob was engaged, you know, those locks you find inside your bathroom, key on one side and then a turn thing. Anyway I ended up calling 911 after a person responded to me yelling CODE BLUE I NEED A PHONE. The person brought a phone and water. I tried calling my parents cell phones to no avail and then called 911, a fire truck came and they used a special device called a door spreader to get the door to pop open, to my surprise the metal door frame snapped right back into place without being permanently bent and the door popped open! Woohoo! Thanks Fire Dept Palatine! Yesterday was a pain!

Looks like this week is Outage Week and Oxygen Week cause first came a crap load of outages, then a pulse oximeter. and today I totally forgot about the appointment but we had a really cool guy named Carlos come out to the house to do some oxygen stuff. Within the hour of me remembering he was coming I went and checked my huge M Tank to find it was EMPTY for some reason so I pulled it out of the closet. For those of you who have never been on oxygen the M Tank is the fat tank the skinny ones are E Tanks my E Tank wasn’t empty, it was full. Someone did not properly maintain my M Tank back when I had the nurses, sometimes a good thing to be taking care of your own equipment! Then came the concentrator maintenance check. Well apparently my old concentrator failed the check by 2% and had to be replaced, the filter in it was also horribly clogged, and it had 20,000 hours on it. Most of which weren’t mine so who knows what kind of air the thing was sucking in! And had never had a preventative maintenance cycle done on it and the internal chamber where the oxygen concentration happens was working very hard, which explains why it was as loud as a diesel truck! The new one he brought in is sleek, blue, and so quiet you can barely tell it’s on. And the nice thing is this one is really low maintenance no filter to clean every week, just one to change every 6 months. And I don’t even have to change it, the guy comes out and changes it I think, either way I know how to change it, it’s dead easy, lift off one cover and theres the filter a little gray box you slide out. What a great new machine this is. I will probably post a Youtube eventually demonstrating how bloody quiet it is.

 

Oh and heres’s a little song here. (Sung to The candy man can)

Who can take an old tank, give you a new one
put on a regulator and test it out for you
The Oxygen Man, oh the Oxygen Man can
The Oxygen Man can ’cause he mixes it with gasses and makes the world breathe good

Who can take a concentrator, swap it out for new
Silent and sleek and a groovy concentrator
The Oxygen Man, the Oxygen Man can
The Oxygen Man can ’cause he mixes it with gasses and makes the world breathe good

The Oxygen Man makes everything you breathe clean and healthy
Now you talk about your health wishes, you can even breathe it all

Oxygen Man, a-Oxygen Man, a-Oxygen Man
Oxygen Man, a-Oxygen Man, a-Oxygen Man

I got a very special present from a very close friend known as Angel Bird. One of her daughters had severe special needs and Atypical Rett Syndrome and is deceased as of 06/15/2010 however she will forever live on in spirit her name was Emily but often referred to as just “Em”. Angel Bird I really thank you for this pulse oximeter. It is by far the very best machine I have ever laid my hands on and it is by far the most portable too and it reads through me moving around perfectly. I can go on and on about how great this oximeter is but the person behind it is the one who I need to go on and on about it. To lose your daughter and then send me a part of her, something that was very close to her and you is truly AMAZING. your generosity will be returned ten fold at some point, that’s just how I think things work. Oh and by the way Angel Bird = MyBigMouth here on my blog, so give her a HUGE thanks.

Now for the technical nitty gritty for those interested / inclined… Otherwise, this is where the blog post ends for you

TECHNICAL SPECIFICATIONS

 

Displays, Indicators & Keys:

SpO2: LED numeric display

0.43 inch (11 mm) high

Pulse Rate: LED numeric display

0.375 inch (9.5 mm) high

Pulse Strength: Logarithmically scaled 8-segment LED bar graph

Low Battery: LED flashes when approximately 30 minutes of battery life remains

Alarm Silence: LED flashes or lights to remind the user that audio alarms are disabled

Sensor: LED flashes to alert the operator to check the SpO2 sensor placement

SpO2:

Range: 0-100%

Accuracy: ±2% at 70-100%; ±3% at 50-69%

Averaging: 4, 8, or 16 pulse beat average

Alarm Range: High – 50%-100% & OFF (1% steps)

Low – OFF & 50%-99% (1% steps)

Pulse Rate:

Range: 30-254 bpm

Accuracy: ±2% at 30-254 bpm

Resolution: 1 bpm

Alarm Range: High – 5-250 bpm & OFF (5 bpm steps)

Low – OFF & 5-250 bpm (5 bpm steps)

Memory:

Spot checks and trends can be stored for up to 99 patients and 24 hours of run time.

Auxiliary Serial Printer/Computer Output:

Data saved every thirty seconds can be printed or downloaded to a PC (trend). Data saved every four seconds in sleep mode can be output and processed by commercially available sleep study software.

Physical:

Dimensions: 7.25” H x 3.3” W x 1.85” D

Weight: 19 oz. (539 grams)

Power:

AC Power: 105-125V ~ 60Hz (WITH A BIG HONKING BRICK)

Battery Standard: NiMH (Nickel Metal Hydride)

Battery Life: Internal rechargeable, not user replaceable. Fully charges in about 6 hours. Approximately 24 hours of continuous use.

Mechanical Durability Test Results: (In other words, it’s really damn durable)

Vibration Testing: In compliance with IEC 68-2-6, IEC 68-2-34

Shock Testing: In compliance with IEC 68-2-27

Drop Testing: Exceeded UL 544 testing recommendations

 

See that giant hellhole of a storm Yeah, THAT thing hit us yesterday. Above is my blog on paper. That is what my blog looked like before I had any type of internet access and before I thought of tethering my phone with my computer. That is what blogs looked like before Blogs and the internet were invented I think… Anyway at 3:45 AM big flashing amber lights were out my window and our power was cut for a minute or two, I figure it was the definitive permanent fix from ComEd, I looked out the window and saw the big ComEd truck. ANYWHO, now the translated version of my text cause no one but me can read it i think.

By the way our internet is out as of 9:00 PM last night and is STILL out as of this post.

Some key words here ETR – Estimated Time to Repair/Resolution and Node – A piece of equipment in internet terms that serves an area.

Monday July 11

9:00 AM Plan was to pee then sleep at 7:30. 7:50 falling asleep BAM no power, alarms flashing. 400,000 without power.

10:00 AM No power dad scrounging around for generator possible code blue

10:30 AM Recovery trucks are out

10:30 AM ETR is today changed from 5 days. Dad knows who to call.

12:30 PM ETR is 1:30 now… we wait and see…

1:15 PM Power is up! (cable was up too!!!)

9:00 PM Cable is out major outage

11:15 PM Over 500,000 without power still.

11:21 PM No ETR on Internet

11:35 PM ETR is Midnight for Internet and TV

11:50 PM Ugh Tethering with phone for now

Tuesday July 12

3:00 PM They totally lied on the ETR, there is no ETR for this outage, it is a Level 4 outage and there are only 5 levels, Level 5 is like if the whole Comcast network nationally crashed. FIX THIS CRAP ALREADY! They said that 54% of the Nodes are functional a few hours ago so figure maybe hopefully tonight sometime MY freaking Node will come up!?! This is the LONGEST cable outage we have EVER suffered. Anywho even if it does not come back up then a technician will be out to the house tomorrow to see if some of our wires didn’t get damaged. I am questioning wire damage as there were still some gusty winds last night that may have brought some sort of object or something into contact with the line.

I am really sick of how outagey yesterday has been and today, can we please have less outageyness this week please? and yes outageyness is a word now.

This being said, I will still be communicating via E-Mail through my phone and computer as normal, Instant Messaging will not be online, Skype will not be online, Facebook will be spotty.

All of the communications will return to normal when the outage is cleared

UPDATE: 6:20 PM 54% of Comcast Devices are back online and an ETR has been established of 10 PM CDT. Hoping that means I pop online then! Otherwise my equipment and wiring will be technician fodder tomorrow!

UPDATE 2: 6:47 PM Just waiting for the ETR to roll by and my net to come back up. found out the power outage starting Toll was 817,000 nearly 1.0M people without power now down to approximately 300K

UPDATE 3: 10:45 PM The ETR has passed 45 minutes ago. They are making progress, 50% of people were up and running as of this morning, as of now in real time its 58% and rising. They say that TV is fixed but it’s not working in our house, our house is officially technician’s fodder tomorrow as one is coming out to check the SDW  or Service Drop Wire (The wire from the pole to the house) and other Comcast equipment on the outside of our house. Hopefully we will have cable back tomorrow. THIS IS PISSING ME THE HELL OFF!!!

Wednesday July 13

UPDATE 4: 10:00 AMish The connection is restored TV AND INTERNET ARE UP, repairs still underway, outage is not 100% cleared, apparently 60% something customers have connection and 40% are without, YAY I am very happy.

UPDATE 5:  12:48 PM Connection Resiliency Testing (Simulated POWER outage test) completed. Multiple disconnects of the power to the Modem result in a immediate service relaunch as expected, connection is resilient and functioning as expected. the outage is OVER for me!

This being said, I will still be communicating via E-Mail through my phone and computer as normal, Instant Messaging will be online, Skype will be online, Facebook will be covered as normally. The technician is still going to come and do an inspection and damage assessment.

Yesterday was the first trach change that was very time consuming in WAITING. We get there 15 minutes early and then wait for nearly one hour past my procedure time before I am taken in back to the pre op area, then my pre op was a nice swift deal which I liked, Dr. Loenthol being my anesthesiologist, she is dead awesome! Then after that I went into the OR I snapped the photo above of the anesthesia machine ready to go with the Sevoflurane in the vaporizer ready to knock me out, minutes later I was gone in SevoLand. While I was under they did the trach change a bronchoscopy and cauterized some granulation tissue. Only thing is him, nor the nurses told me that he did it, he did mention in an older email that he might do some cautery in the OR, well i should have figured he DID IT. Today I didn’t know why my neck hurt so much till I took the gauze out and saw all the gray granulation tissue goop! Also I noticed my trach collar was way too tight on one side pulling my trach tube off to one side, OW.

ANYWAY now that I figured everything out, fixed the collar, cleaned my site. I’m no longer hurting.

Well it’s that time again, time for a trach tube change which means SEVOFLURANE! I will be getting some super good sleep in the OR tomorrow. I will NEED it cause I gotta get up at bloody 8:30 AM to be there at 9:30 AM for a 10:30 AM procedure. Anywho, heres the clock! watch it closely!

That’s me up there smiling happily while on my Hill Rom The Vest machine, lots of pictures here and well anyways I have been bringing up so much stuff today, All of it is clear. AND my temperature is 98.8 which is a slight fever but nothing that would stop the procedure on Friday from going. By then I should be 100%

What I have been doing is Continuous Vest Therapy (CVT herein) and that means I am spending at least 4-7 hours per day on the machine. I like it so it’s no big deal to me to be squished tightly and stuck in one place for 4-7 hours a day. I am enjoying it a lot actually, I find it very relaxing and calming and stimulating to my senses. The Vest is definitely a sensory haven for my body, with its blood pressure cuff like effect for my body. It squeezes me tightly. I love it. And I love that it helps me be comfortable AND bring up secretions. I will go back to my usual 1-2 hours per day (1 hour twice daily) whenever the hell I feel like it, but for now I need the CVT so I can be well for the Trach Change on Friday and so that I can be well to go to the Abilities Expo 2011 and snag some photos!

Well well well! Exchanged the battery Friday and tried it out today. it works beautifully! The machine says I have about 6.5 hours remaining on the battery after 10 minutes of use which is great. I was kind of quick to plug it back into the charger for fear of using up valuable cycles on my battery. So I only ended up using 10% of the battery, of course I will once a month do a full deep cycle as Apple recommends at their battery page. Anywho the battery stuff is really good news to me!!! This battery is the best ever behaved battery I have EVER had!

I know I know people are getting sick of seeing my trach or so my parents say, I have yet to receive an EMAILED complaint. Anywho my trach was miserable last night, i had to zap it again as there was a HUGE piece of granulation tissue, hell to the point that Doc Walner is going to need to do some more zapping in the OR as this is just the SURFACE and the granulation tissue actually goes deep below the surface, sucks huh! Oh well. Anyway moving on.

Well looks like the untold has happened, I  got a respiratory infection for once. These don’t happen often but when they do happen at the first signs we must intervene, me and Doctor Stone are very heavily into Early Intervention and so we started me on a series on Bactrim DS. I knew something fishy was starting this morning when my secretions were thicker and yellow. so I did my vest ALL day , I love doing it anyways, and when I started the secretions were thick and yellow, now they are coming out clear / white. Hopefully I cleared everything out. At the start when I reported to Doctor S. I had a fever at 99.3 and right now as of this post my temperature is 99.1 I am hoping this is something that the antibiotics along with my extreme use of The Vest will clear out quickly! This infection incident should not affect Fridays upcoming trach change which I need badly as my trach has a slow leak, as usual when they near End Of Life or EOL. The average time to EOL on these tubes is 3 months well in my body they die around 2 months.

Last year I snapped a few photos of the fireworks but this year they were just noisy and poor quality. They didn’t even become visible at our house and with me being sick there is no way we were going to go to the park that was packed with 1,000′s of people so happy 4th of july and theres your fireworks photo above. LOL!

Uptrend in unique visitors, slight downtrend in overall visits.