Alin's Site

Woah I was late on this post, way late.

We had the discharge meeting yesterday, I pretty much directed everything  like an orchestra.

DISCHARGE WILL BE TUESDAY BARRING DISASTER OR MEDICAL EMERGENCY OR OTHER THINGS OUT OF THE HOSPITALS AND OUR CONTROL THAT WOULD PREVENT THE DISCHARGE PROCESS.

The discharge will occur around noon on tuesday direct from the specialized care unit. I will be transported home by ambulance to 24 hour nursing care at home which will step down over time to 8 hour night shifts only however it may take some time.

Other than that there was little news yesterday.

There will be a long video of the whole ambulance ride and loads of pictures taken of my arrival and set up at home by dad.

Tomorrow is my discharge planning meeting. Tuesday is looking like a good day to discharge.

Meds hitting hard. goodnight

Visitors must follow “smurf” protocol (gown mask gloves) or at minimum mask gloves

Yesterday we had little bits of fun.

Early afternoon yesterday they wheeled in a portable monitor, unplugged my ventilator from the wall and put it onto tank oxygen and battery power and we were off to go for my swallow study after they put the Ambu-Bag and a portable suction unit on my bed and my fat assed file. and we cruised down to the fluoroscopy area.

Please note, a swallow study is a simple “Snapshot” of function on a given day at a given time. With cerebral palsy like condition swallow fuction can change in hours.

After that we waited a while and they came and took me into the fluoroscopy room. They got me in a wheelchair like contraption and added a 15 degree seat recline so I don’t fall forward and then we started the test. For those of you who don’t know fluoroscopy very well a swallow evaluation consists of you sitting on a chair between two close walls, your front and back are open but your sides are pretty constricted by the LDFE (Low Dose Fluoroscopy Emitter) and the receiver. Overall if you have claustrophobia the test won’t be bad if you just keep your head forward, it is also a growing practice to allow the patient to see the live fluoroscopy feed screens and cue lights so that the speech pathologist does not have to go into the X-Ray beam as much. Everyone still must wear a lead apron, my pathologist had quite a nice lead apron with decorative patterns and fabric, probably more comfortable for her doing  while the attending fluoroscopy specialist had one of the hospitals trademark red with sparkles PVC lead aprons. During my study I was able to see most of the feed screens and cue lights. Depending on your hospital there may be no cue lights or no screens at all! During the swallow study you will eat or drink several different food consistencies with barium, it is a white chalky substance that has very little taste unlike older barium. first you start with barium impregnated water. There are four ways to tell you are allowed to swallow or otherwise the camera is active, one is an audible grinding or whirring sound coming from the emitter, two is a moving image on the screens, three is a visible cue light lit, four is a visible cue from the pathologist. Anyway you do water, then a thicker puree, then some sort of barium pudding, then barium bread and crackers and the test is over. After the test you might be slightly sick of the taste of barium let alone not want to eat squat. Barium WILL make you constipated!

Yesterday when we came back from my swallow study I had the option of going back to my original room or letting the HVAC (Heating Ventilation and Cooling) guys into my old room and taking what was Kira’s room over. I decided to take over Kira’s room and along with that came the new classic joke of the nurses and me “Kira got discharged so I had to take over her job of not shutting up and keeping the unit on its tip toes. And there is no proper location to do it than in what was her room”

Visitors must follow “smurf” protocol (gown mask gloves) or at minimum mask gloves

Today (yesterday) they were supposed to do the swallow study but it never happened as the fluoroscopy center is jam packed. 1 PM tomorrow is when I go downstairs for my video swallow.

Tomrorow (Today) Kira my close friend who does not shut up down the hall is going home, congrats for her! But now I have to take over her job as “The one on that room who does not shut up” So starting today I will need to run like a motorboat.

We might discharge sometime next week if things all work correctly in our favor.

Visitors must follow “smurf” protocol (gown mask gloves) or at minimum mask gloves

Today there was not much, doctor Walner my E N T came in and was really happy to hear me speaking. I have a Video Swallow Study ordered that might happen tomorrow which will clear me for a CLOSS (Clear Liquid Only / Soft Solids) meal which means I can get chicken soup and other great food, this does not mean I will be weaning from the G-Tube, oral food is to supplement and augment my G-Tube feedings.

I also am doing the job of Kira (a close friend of mine here on the floor) of not shutting up now thanks to my new found ability to speak again

Visitors must follow “smurf” protocol (gown mask gloves) or at minimum mask gloves

A picture of me from the front back at the bedside and really happy in all my straps

Good news and bad news

Good News

All of the photos of me and my new Permobil C400 in all of its lighted and strappy glory are available by clicking above!

Bad news

Last night mom called and told us that when she looked in the mail she received papers from our current COBRA provider that our insurance is being switched from Aetna which is working quite nicely to United Healthcare *cough* United Nightmare *cough* This is a real nightmare as the wheelchair company is no longer in network so the chair is officially “black zone” meaning, if something breaks, no one will repair it, if I need an upgrade no one will do it. This chair is NSM territory and NSM is out of network. To make things worse the nursing company, the only one in the area who serves our area that is trained in ventilators might not be in network, if that is the case we could be stuck in the hospital for a month or longer while we wait for a special state waiver program to pick up. Me and mom are going to try to pull some strings tomorrow at the state and try to get Illinois CHIP (Comprehensive Health Insurance Plan) for people uninsurable due to disability, pre-existing condition or dropped from COBRA or unexpected COBRA changes that cannot be paid. This plan is through Blue Cross Blue Shield which has everything I need in network including this hospital. So it is extremely critical that we get those strings pulled, if ANY of you reading this know anything about pulling Illinois CHIP strings CONTACT IMMEDIATELY VIA DIRECT E-MAIL AT M8R-ctvojx@mailinator.com

Again visitors must follow the “Smurf” protocol (mask gloves gown) or at minimum mask and gloves. thanks!

Me and dad by the hand wash station

Part two!? what the hell you are thinking. Well I decided there is a lot of news to be shared for yesterday

First of all lets recap last night with dad.

He went to take my temperature with a digital ear thermometer that uses ejectable plastic covers and when he did the first time he instead of pushing the measure button ejected the cover into my ear and I was like what the hell, that don’t feel right and picked it out of my ear and said you numbskull! WRONG BUTTON!

Then later on it was his turn to read the monitor and he accidentally touched the screen not knowing it was a touch screen he caused some havoc with it, he was looking at another patients monitor through the network telemetry and I said click the X click the X, he replied I see no X I see no X. I then started pointing at the screen frantically thinking what would happen if a nurse walked in. We then finally figured it out.

Hilarity ensued on both.

Anyway this post is about photos! I got more photos posted to the gallery for my new tracheostomy and I am working on the powerchair photos, they should be ready today. I have a video of me speaking but youtube upload is not working correctly.

Oh well here are the photos

Wow, late late post for yesterday today. I fell asleep in my chair for about an hour or two before the nurse said we need to get you back in bed. It was obvious since I had not taken any of my medications blah blah blah. How I ended up there, me and dad went for a drive around midnight and got back at one and I just decided to crash out I was so comfortable, with all of my straps holding me me tightly yet extremely comforting and all of them were nice and warm, those of you who don’t know my autistic end should learn it now. Autism Post. For those of you who are too busy to read the long report and or post I put it in simple words. The tightness relaxes me and also causes my muscle tone to pretty much zero out, the warmth does the same. This results in zero spasms zero movement, extremely restraining due to the tightness yet so comforting because of said restraining factor. It helps me relax since it allows my body to externally be controlled instead of me and my brain struggling to try to control the positioning.

The 24 hour care by parent thing has ended as of midnight I think. It might be longer not sure.

I am still working on the photos. I also have a short video of me talking!

I also as of 7 PM last night am able to speak with the cuff in my tube deflated so we will try doing that as much as possible during the day with the ventilator in an auto cycle mode, which put simply means it throws pressure supported breaths at me whether I want them or not. Neurologically when I am speaking this is good as my brain just takes all of the breaths and if it does not want one it throws it back at the ventilator. I cannot speak while off the ventilator without its help aside from one word per inhale. In other words this means I am quite ventilator dependent.

The smurf protocol is not being followed except for visitors.

Visitors are welcome but must follow full “smurf” protocol or at bare minimum partial. Gloves + Mask MANDATORY. Gloves + Mask + Gown preferred to minimize risk of transmisssion.

This post was even LATER. since I fell asleep on the switch in bed.

Today Mom and Dad technically began the 24 (48) hour Care By Parents evaluation study, which is going well.

Today I got my new wheelchair! I don’t have the pictures up yet but it is a priority to get them up, I also have two videos of me driving my new chair but those won’t get uploaded for some time. I absolutely LOVE my new chair to bits, it is eons better than my old chair as it was constructed by a multi disciplinary seating clinic involving a PT specialist, my rehab doctor, and an OT specialist. Which resulted in a chair perfect for all of my needs, even my sensory integration disorder needs which is a first, it also fits all of my complex positioning needs that my other chair did not. One thing to be warned about, it has so many straps I could pass off for an insane person. Ankle straps, leg harnesses, seat belt, upper body harness. That’s a lot of straps, and you will see all of them in the photos. Although there is so much restrictive positioning control involved I find myself so comfortable in my new chair I could probably sleep there quite easily, just need the headrest tweaked a bit to work better with the trach,

I also have some very bad news, today  when cleaning my tracheostomy site we noticed bubbling of the hydrogen peroxide on our second cleaning, we disregarded it and said let’s wait and see. Third cleaning time I pulled the gauze to reveal some pain, and green discharge. A culture was taken expeditiously and my fever is rising as we speak. We are probably going to be back on the 3 day smurf list, which means plastic gowns gloves and the classic O R style masks for all nurses.

VISITORS WILL NOT BE ACCEPTED WITHOUT WEARING A “SMURF” SUIT. VISITS SHOULD BE AVIOIDED IF POSSIBLE.

More news “tomorrow”, crash now.

Me and Christine my lovable Respiratory Therapist (click for more)

My sleep is screwed for tonight, Will be lucky if I get to sleep within the next few hours, bad because mom and dad have to do all of their learning today.

Anyway all of the photos are up subject to updates will notify.

Goodnight