Alin's Site

Swine flu sucks. Lets invade the O.Rs!

Yesterday we got to the pulmonary office and immediately when we walked in the door we saw a few blue masked people, mostly unmasked, apparently people are not too worried but those with chronic diseases and disorders that affect the immunity are definitely worried. Mom was rather quick to grab masks for both of us, primarily to firewall me from any possible risk for infection with it. Although there are still no cases reported in this state I am doing everything to prevent any possible exposure, while still preserving ability to travel within the state. Out of state travel is disallowed currently. I wrote this from the pulmonary floor where I felt like I should go invade the O.R’s and do some off the record surgeries. I am a neurosurgical nerd anyways, lobotomy anyone? heh heh heh. I got taken into a room and me and the doctor did a load of talk, as I had predicted he went ahead and ordered that I receive a resting ABG draw and I mentioned the idea of continuous pulse oximetry as i predicted, bam another one in the bag there. But then he threw something at me I wasn’t exactly expecting today, an order for an ETCO2 monitor, yep, End Tidal Carbon Dioxide monitor. The only problem is ETCO2 monitors rarely get approved by insurance which is the converse of pulse oximeters which are pretty easy to get approved. I am going to work on both and get them out in the next week.

Neurosurgeon Dr. Shaun T O'Leary

Today we also went to my Neurosurgeons office to discuss DBS and other methods for dealing with the spasticity and contractures in my legs. We have to go see another doctor for one more evaluation before we get the decision as to what surgery to do. But so far surgery is looking like it is somewhere in the deck of cards. He also kicked up my Baclofen pump to 377 mcg per day from 316 mcg, I feel slightly looser in my arms but the leg contractures are not going anywhere without surgery, I already know that. But movement before hitting those contractures is a bit more fluid and not so jerky. So I’m liking it
He also signed all the papers for the wheelchair as the PRIMARY prescriber, the rehab therapist will be secondary prescriber, I need to call him up cause I forgot to have him write up actual prescriptions to go with the order / justification forms, oops! But that aside its moving along. I expect the chair to be submitted to insurance by May 31st, I expect to have my butt in it by my birthday August 8th! What an irony it would be if it delivered on my birthday!

Pulmonary doctor ordered that I be on a pulse oximeter when I am at home and report the trend charts when the oximeters memory fills up by just emailing the trend file, will be easy. Neurosurgical kicked up the baclofen pump from 316mcg as of march third to 377mcg now. So I have to write up the justification for an oximeter now and an ETCO2 monitor for at night usage.

Tests / visits / devices ordered are

• Pulse Oximeter (ordered by pulmonary) <ACTIVE>
  
• ETCO2 monitor (ordered by pulmonary) <ACTIVE>
  
• Pulmonary office visit – respiratory problems cropping up (DEAD) (OP) <DONE>
• Neurosurgical office visit – baclofen bump up (DEAD) (OP) <DONE>
  
• Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (Live – To be scheduled) (OP) <INACTIVE>
• Pulse Oximeter (ordered by pulmonary)
  
• Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis. (Live – To be scheduled) (OP / IP at doctors discretion) <INACTIVE>
  

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.

• New wheelchair (CONFIRMED: WILL BE ORDERED, PAPERWORK TO BE SIGNED MORE) (OP, Duh!) <ACTIVE>
• Deep Brain Stimulator insertion surgery talk (new surgery in talks) (IP, Duh!) <INACTIVE>
• Pulmonary Functions Test + Waking ABG draw (resp problems, PFT is a default test every 3 months, 4 months passed. waking ABG based on research) (OP / IP PFTs to be OP ABGs probably IP) <INACTIVE>
• Echocardiogram (repeat due to 1 year passing since last ECHO) (IP) <INACTIVE>
  
• 24 hour holter monitoring (repeat due to 1 year passing since last 24 hour holter) (IP) <INACTIVE>
  
• CT head & spine w/o contrast and with contrast (repeat due to 1 year passing since last CT series) (OP OR IP) <INACTIVE>
  
• Urodynamics study (under anesthesia or neuromuscular blockade) (repeat due to question of suprapubic catheter) (OP / IP at doctors discretion) <INACTIVE>
  
• Endoscopy (repeat due to 2 years passing and unusual pain in abdomen intermittantly) (OP / IP at doctors discretion) <INACTIVE>
  
• Spinal plain X-Ray series – June (6 months will have passed, usually done twice yearly) (OP) <INACTIVE>

This is just a small update today. I have now added <ACTIVE> and <INACTIVE> headers to everything. <INACTIVE> means that it is not happening THAT DAY or within 24 hours, it does NOT mean that it is canceled or <DEAD>

I added that I am going to neurosurgical appt today that I forgot to add days ago when we scheduled it

Tests / visits ordered are

• Pulmonary office visit – respiratory problems cropping up (Live – Scheduled Apr 29th 1:40 PM) (OP) <ACTIVE>
• Neurosurgical office visit – baclofen bump up (LIVE TODAY @ 4:15 PM) (OP) <ACTIVE>
  
• Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (Live – To be scheduled) (OP) <INACTIVE>
  
• Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis. (Live – To be scheduled) (OP / IP at doctors discretion) <INACTIVE>
  

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.

• New wheelchair (CONFIRMED: WILL BE ORDERED, PAPERWORK TO BE SIGNED TODAY) (OP, Duh!) <ACTIVE>
• Deep Brain Stimulator insertion surgery talk (new surgery in talks) (IP, Duh!) <ACTIVE>
• Pulmonary Functions Test + Waking ABG draw (resp problems, PFT is a default test every 3 months, 4 months passed. waking ABG based on research) (OP / IP PFTs to be OP ABGs probably IP) <INACTIVE>
• Echocardiogram (repeat due to 1 year passing since last ECHO) (IP) <INACTIVE>
  
• 24 hour holter monitoring (repeat due to 1 year passing since last 24 hour holter) (IP) <INACTIVE>
  
• CT head & spine w/o contrast and with contrast (repeat due to 1 year passing since last CT series) (OP OR IP) <INACTIVE>
  
• Urodynamics study (under anesthesia or neuromuscular blockade) (repeat due to question of suprapubic catheter) (OP / IP at doctors discretion) <INACTIVE>
  
• Endoscopy (repeat due to 2 years passing and unusual pain in abdomen intermittantly) (OP / IP at doctors discretion) <INACTIVE>
  
• Spinal plain X-Ray series – June (6 months will have passed, usually done twice yearly) (OP) <INACTIVE>
  

England is fried

This is official declaration that due to the WHO outbreak level being escalated to level 4 that the trip to England has been CANCELED. This is a FINAL cancelation. There will be NO restorative action done on this trip. I have tried to rekindle hope in this twice already, this is the third and final blow, and this one was a huge K.O.

Alternative wish is being processed and will involve a very powerful super server / super computer. More details will be published as they become available

England is probably fried

So we thought England after the whole February 13th toss up may have had a chance again.

Well, this is pretty sad news many people in england have had their hopes up on me visiting, and it’s more than likely smashed to pieces again. I have just sent what is probably final cancellation declaration into Make-A-Wish on three counts against the trip to england. The most major is the Swine Flu problem spreading in the airports and having already had cases in the United States I DO NOT feel air travel overseas or anywhere for that matter is safe for me. Also the fact that I would have to travel in an airline seat makes my butt and back and neck hurt just thinking about it, oww! Okay time to stop thinking about that. Then there is the problem of getting sick with whatever other infectious illnesses and ending up having my Make-A-Wish go from being a fun trip to the UK to a trip to the UK to get admitted to the hospital.

So at this point I think England is a complete bust. I told them in the E-Mail I am going to give it a month to see if they get the Swine Flu shut down or if it keeps spreading. If it stops spreading and gets shut down I will rethink this decision. If it keeps spreading then by all means the trip to England is effectively NUKED.

Those of you out there who might be thinking, “Damn this guy is a total hypochondriac.” My answer to you, Swine Flu is a serious risk and is extremely dangerous for even normal people, for anyone affected by neuromuscular disorder it is likely 100% fatal.

For more information on the Swine Flu click this area The page is updated daily. So far 40 cases confirmed IN THE UNITED STATES. Although the spread is pretty limited right now it is still actively spreading, hence why I said I will recount in 1 Month and give final cancelation then.

Comcast Cable Modem

All is back to normal. Comcast came out yesterday and fixed it. Had to bring a DEDICATED line from outside (at the high voltage pole line) into the house through a new step-down channel and to the modem DIRECTLY.

Comcast Cable Modem

Our internet service has been down a lot over the last 72 hours. For the last 5 days we have been having major power “Purity” problems with lots of surges, spikes and sags like last year around this time. I am currently in talks with ComEd about getting this fixed. Bastards said they are sending a truck out within two hours to check things out twice in the last 24 hours and still no damn truck. Tomorrow (today) is the third time I will be calling them, so it’s not going to be a very courteous call, it’s going to be a more “You get a damn truck out here or face legal problems from damage to my equipment.” type of phone call. Tomorrow (today) Comcast comes out to fix the modem at 8:00 AM as in REPLACE the unit. Thanks to ComEd and other factors such as my heavy use I have killed two modems in the last 4 months. This is getting to be a bit outrageous at this point. Comcast needs to make more robust modems and ComEd needs to clean their damn power!

Thank’s to my BlackBerry I have failover communications that I have been using intermittently during the intermittent Comcast modem breakages. The modem is “on it’s last leg” in my opinion. It is functioning as of this post but it fails every hour or two for an hour so its only 50% uptime.

E-Mails and communications may or may not be delayed up to 6 hours.

This reminds me of last year so much!, UGH!

The EEG report really came back two days ago but I decided to look at the disk myself and see these seizures and spikes for myself, and it was nuts. Two seizures, one might be false from me scratching my head, but the other is definitely an actual seizure because I was asleep and all EEG waveforms were normal and then BAM 5 channels went totally out of control. Then theres those 833 Epileptiform spikes to talk about, sheez, 3 years ago on my last EEG I only had like maybe 60-100 spikes, don’t remember exact number but DAMN thats a lot of spikage!
A pulmonary PRIORITY 1 appointment has been added to the list to be done in 2 weeks. This appointment may be subject to a code blue push up if a respiratory emergency occurs and I end up going code blue (going to E.R) a code blue event is unlikely. I am having symptoms for muscular origin respiratory disorder, may need a BiPap / NIPPV (Non Invasive Positive Pressure Ventilator) at night.

Think I am missing a valuable test that could be helpful? Drop me a line on my Contact Me tool.

Tests / visits ordered are

• Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (Live – To be scheduled) (OP)
• Pulmonary office visit – respiratory problems cropping up (Live – Scheduled Apr 29th 1:40 PM) (OP)
  
• Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis. (Live – To be scheduled) (OP / IP at doctors discretion)
  

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 Functions Test + Waking ABG draw (resp problems, PFT is a default test every 3 months, 4 months passed. waking ABG based on research) (OP / IP PFTs to be OP ABGs probably IP)
  
• New wheelchair (CONFIRMED: WILL BE ORDERED, WAITING ON PAPERWORK) (OP, Duh!)
  
• Echocardiogram (repeat due to 1 year passing since last ECHO) (IP)
  
• 24 hour holter monitoring (repeat due to 1 year passing since last 24 hour holter) (IP)
  
• CT head & spine w/o contrast and with contrast (repeat due to 1 year passing since last CT series) (OP OR IP)
  
• Urodynamics study (under anesthesia or neuromuscular blockade) (repeat due to question of suprapubic catheter) (OP / IP at doctors discretion)
  
• Endoscopy (repeat due to 2 years passing and unusual pain in abdomen intermittantly) (OP / IP at doctors discretion)
  
• Deep Brain Stimulator insertion (new surgery in talks) (IP, Duh!)
  
• Spinal plain X-Ray series – June (6 months will have passed, usually done twice yearly) (OP)
  

I killed the 1 hour EEG because both me and mom felt that the 48 hour EEG supersedes it in quality and reliability. The order may pop back on if the doctor forces it through however until then it is dropped. I fixed some priority errors and added a Pulmonary Functions Test (PFT) and ABG order to the list as it has been more than 3 months since my last PFT and the guidelines that my pulmonary specialist throws at me is do it at least twice a year, every three months if you feel your respiratory problems are progressing, and they are yet again. The Waking ABG is a new test I am bringing to the table but is quite common for patients of respiratory problems, though this is a more unique type of ABG draw. Most ABGs are done during the day while a patient is sitting up which is no good for patients of neuromuscular definciency to clear CO2 from the blood and lungs in their sleep, the best time is immediately after waking up before making any movement or even while asleep! I will probably have the PFTs done before the ABG as that would be easier to do in the hospital while I am in for something like the muscle biopsy, endoscopy, or brain stimulator surgery, or urodynamics.

All of the tests and procedures now have OP (Outpatient) Or (IP) Inpatient codings. Some of the codings may change dynamically as some of the tests or procedures can be done with me being released the same day but the doctors often decide to hold me for monitoring.

The list below is updated. RED is for high priority. Orange is for medium. Green is for low priority. Black is for dead tests that are done or canceled. Status messages will be given in parenthesis.

Think I am missing a valuable test that could be helpful? Drop me a line on my Contact Me tool.

Tests ordered are

• Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (Live – To be scheduled) (OP)
  
• Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis. (Live – To be scheduled) (OP / IP at doctors discretion)
  

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.

• New wheelchair (CONFIRMED: WILL BE ORDERED, WAITING ON PAPERWORK) (OP, Duh!)
  
• Echocardiogram (repeat due to 1 year passing since last ECHO) (IP)
  
• 24 hour holter monitoring (repeat due to 1 year passing since last 24 hour holter) (IP)
  
• CT head & spine w/o contrast and with contrast (repeat due to 1 year passing since last CT series) (OP OR IP)
  
• Pulmonary Functions Test + Waking ABG draw (resp problems, PFT is a default test every 3 months, 4 months passed. waking ABG based on research) (OP / IP PFTs to be OP ABGs probably IP)
  
• Urodynamics study (under anesthesia or neuromuscular blockade) (repeat due to question of suprapubic catheter) (OP / IP at doctors discretion)
  
• Endoscopy (repeat due to 2 years passing and unusual pain in abdomen intermittantly) (OP / IP at doctors discretion)
  
• Deep Brain Stimulator insertion (new surgery in talks) (IP, Duh!)
  
• Spinal plain X-Ray series – June (6 months will have passed, usually done twice yearly) (OP)
  

Woopra 1.2 Stable Screenshot

I officially now have a 100% REAL TIME tracking back end on www.alinssite.info soon to be deployed to all iguido.com run websites. This system will not in any way affect the current statistics reporting, they will still be reported in the same format. This system is designed to give me real time insight as to what is going on with my websites, who is viewing them, from what geographic location, what pages they are viewing and other data important to REAL TIME tracking. Understanding how people are concerned about privacy this system in no way installs any software on your computer. It is completely server side and relies on a small Javascript in the page that is out of sight. The minute you leave my website or close the window the system immediately looses track of you.

FOR NO REASON WILL THE STATISTICS PROVIDED BY THIS SYSTEM BE PUBLICLY RELEASED OR POSTED.

Just decided I would let you get a glimpse at a new server back end tool