Alin's Site

Today (Yesterday technically) was rather uneventful, it’s a Sunday, what do you expect? The hospital to be jumping with doctors and stuff shipping in and deliveries. I think NOT! Anyways today I did not do any speaking or much and spent all day on “My” trusty LTV1000. I look forward to receiving my very own LTV1150 ventilator that I can literally call mine!

Soon the electrician’s will be at the house to wire a DEDICATED circuit and line for my ventilator.

Soon mom and dad will learn to run the ventilator and change my trach tube, that is going to be painful! Lets hope I don’t go into ARDS (Acute Respiratory Distress Syndrome) from it again!

I got to see my two best buddies from the RT world Christine and Tara which made me a lot more comfortable in this unit. Tomorrow (Today) the unit will be more active as all of the doctors start doing rounds again!

Goodnight all. I manually pushed an update to the audio of the blog for now.

See those listen buttons above each post? They should start working and producing a listenable form of the blog post within about a day or two. It’s a new service provided by iSpeech.org and it is very useful seeming. It will come in very good use for low vision users or users who just prefer to hear things.

Hope it all works well, I hope to soon have the ads removed and the system working a bit more real time, I am working on finding out if they offer any charitable services.

I forgot to mention that yesterday I was moved from the PICU to the PSCU (Pediatric Specialized Care Unit)

Today I was talking for a hour or so while on CPAP-PSV on the ventilator and then I used the high flow heated and humidified trach collar for a while (Not a ventilator) I got really tired from all this, I am falling asleep randomly for a few seconds at a time. I solved this by doing a rapid “Lung Flush” on the ventilator by delivering manual breaths in rapid succession. I think it was some CO2 retention.

The cuff on my trach tube seems to have a slow leak, and it is one of those stupid Tight To Shaft tubes, don’t get me wrong, It’s great for speaking, I spoke for a while, with the assistance of the ventilator pushing air in using CPAP-PSV. But this slow leak has got to go, maybe it’s designed to be deflated and re-inflated with fresh sterile water every time. Either way, the tubes need work and we will be speaking with Nancy the ventilation nerd of the hospital and Doctor Walner who is the surgeon who did the operation.

We also have to work on the leaky stoma issue, I had to pack gauze around my entire trach site and hold it tight so I could speak otherwise all the air would come out of my neck (not the trach tube, my NECK) annoying as hell even more annoying is all the gunk that comes spewing out when you do such a thing. Speech rehab is not going to be simple as far as I see. Doctor Walner is either going to need to get a  larger diameter tube put in or surgical revision might be needed. stay tuned!

I am doing well clinically, I have clear secretions and am suctioning well. I have been released to the Pediatric Special Care Unit (PSCU) from the PICU.

We were not able to do any speech rehab stuff today, maybe tomorrow.

Goodnight all.

A pretty eventless day today. not much happened.

I am feeling better and better. Tomorrow I have decided we will try deflating my cuff while on the ventilator to see if i can speak with the aide of the ventilator pushing air into my lungs constantly with pressure support (CPAP-PSV) Respiratory Therapists giving final decision. I got the idea from another person in the hospital who speaks in this way and also read it is easier to speak on the vent than off.

Anyways everyone, goodnight!

The pneumonia keeps looking better and better. The CPT and  Dornase is helping a lot. I am pulling astronomical secretions out of myself too since introduction to the series of ventilator that will soon become a part of my “family” at home. The one they are currently using is an LTV1000 which is a institutional model with an external PEEP valve. I am getting the LTV1150 which is a much newer high end home care and ICU combination ventilator, it supports the LTM Graphic Monitor which is a system that allows medical nerds like me, doctors, and respiratory therapists, to the same data that an ICU ventilator provides instantly, such as respiratory waveforms and pressure loops along with data tables. I will be saving up to get my own LTM Graphic Monitor. The LTV and LTM Stand for Laptop Ventilator and Laptop Monitor since both are about the size of a really chunky 80′s laptop, the ventilator weighs in at a record setting tiny 14 pounds, making it easy to carry and lift. The LTM weighs a little over 3 pounds or so, I don’t have exact specifics on it’s weight so I am estimating that.

Other than the new ventilator not much happened today, we discussed speech restoration and also discussed trach tubes. We will begin to see about speech restoration tomorrow.

Goodnight all from LGCH PICU

Wow this post is late, my dad is sleeping here and is snoring like the buzz saws they use during the day for construction downstairs. No Versed for me unless I can’t sleep, I doubt I will with Mr. Buzz Saw here.

Things are on the up and up, I will still be in PICU for 2 more weeks from the first day of treatment. (T+9) They first started with a very broad spectrum antibiotic, Vancomyocin. Then they switched me to Zosyn and Oxacillin. Hopefully the staph will be gone and the pneumonia will not scar my lungs.

I am feeling better, my suctioned secretions are no longer extremely thick and yellow but that is also due to another nebulizer medication they put in my ventilator twice a day called Dornase which thins secretions, I have been on the Dornase for two days now. It helps a lot. Starting “yesterday” I received an order for CPT (Chest Physical Therapy / Chest percussion therapy. That is helpful too

Goodnight, hopefuly I will get some sleep

the PCR results came back NEGATIVE for Swine Flu H1N1 which is good. The Tracheal culture taken through my tracheostomy showed Staph infection in my lungs, I had a chest X-Ray which showed Staph pneumonia. both of which are being actively treated. It is not known if I have the PVL toxin which could make treatment much more difficult to treat let alone possibly kill me. Things are looking a lot better than they did 2 days ago though! More news to follow

Today it has been declared this morning that I have pneumonia in my left lung. The pneumonia was caused by Staph infection. This is a SERIOUS complication. One that COULD kill me. We will be doing daily updates to the news as usual.

I am feeling a bit better after being on the antibiotics but there is still major danger especially if it is the PVL toxin producing Staph bacterium. If I make it through the first 72 hours if i have the PVL strain then I should survive. If mine is not the PVL strain I should be fine. We will have more information including PVL status tomorrow when the urine culture, trach culture, blood culture, and nasal PCR swabbing come back. The nasal PCR is to check me for swine flu and a few other infectious diseases. CDC has been notified.

I am on a strong antibiotic and painkillers along with IV hydration. I had to get my IV put back in.

Goodnight All