I am home as of now, however my doctor who admitted me Doctor Aljadeff in pulmonary said it is a big gamble me going home right now, the insurance won’t cover me staying tonight. Grrr!!!
Nurse kelly is here and well im comfortable and relaxed. time to hit the collar!
Yesterday morning at 2:00 AM the code blue alarm was sounded and Advantage ambulance rushed me lights and sirens on to Lutheran General Childrens Hospital with the same stroke like symptoms as the first Baclofen pump failure.
I was rushed to CT scan to check the pump, those results are not back to us yet. Pulmonary crisis was as a result of the pump failure we think though cultures are being run and the full smurf protocol is being followed.
By he way the Cervical Collar is such a help with my trach hole issue, now it leaks soo much less. I will have a photo of the site soon, the hole is less than 1/4th its original size!!!
And its comfortable!!! once I get all the adjustments down.
Last night for sleep was broken cause of hot flashes, and the monitor constantly alarming.
Well here it is, this is the BIG DUMP of photos and videos that I forgot to put up. Starting with photos ending with videos, WARNING: THIS POST IS HEAVY IN FLASH.
Coming home after the SVT heart disaster
In case you didn’t know about the big SVT disaster that resulted in a PICU admission heres the blog post HERE
Trach tube easily visible
This above photo is from a series of photos regarding my poorly healing trach site, now healing much better thanks to my Miami J cervical collar that I absolutely LOVE to bits.
door to the PICU, during isolation
This is the door to my bedroom, a.k.a the PICU, the kitchen is lab pharmacy and meal prep, the basement is central medical supply. Its a self contained hospital!
Me smiling happy and hot
I got a boat load of Neoprene Belts from Harold over at leatheroaks.org, awesome friend of mine!!! I love all my new belts!! They are extremely warm and comforting and tight!
Me relaxing while dad measures everything
As some of you know the Elks of Illinois are paying for my new lock down box, these are the photos that were taken during the planning! It’s gonna be finished sometime today or tomorrow so I will have to check it out! I was so comfortable in my chair, it’s always a good feeling to get out of bed and get into it!
Me on the setup with my passey muir valve
Yesterday I got my new High Flow Heated Humidified Trach Collar (HFHHTC) system and I got pissed that it came on another IV pole so I engineered it to work with my ventilators humidifier. Jackpot bye bye extra pole!
One of my ventilators started acting weird today throwing constant alarms at us and we couldn’t fix it, so the ventilator was still working but alarming all the time. So I got a new vent from Walgreens and it took me 5 minutes to get it set up and working but it took me and my nurse 45 minutes to get the damn carrying handle onto it. ARGH!
Takes two hard drives to fix 1!!!
I got home from the hospital by ambulance yesterday! I am happy to be home with my own nurses. I got around to fixing my computers sick hard drive, take a look at the photo above!
Doctor wearing PVC lead apron in Electrophysiology Study (EP Study)... hug please?
I wish my cardiologist had a shiny PVC lead apron like the one on above! Some serious hugs following this procedure alike my Spinal Tap (link) would have been really useful. The procedure was done and may need to be repeated eventually, to hopefully provoke my SVT and diagnose my severe bradycardia and any other electrical problems with my heart. He said I DO have electrical issues with my heart according to monitoring and the EP study. But none that are severe enough yet to warrant an interventional surgery. I am pretty happy. Something tells me the EP study would have been more fun if i was awake and on neuromuscular blockade (Unable to feel anything) Oh well, maybe I will get that next time!
The procedure its self was easy, I went into the Cardiac Rhythm Management Lab (CRM) which is a Cath lab AND Electrophysiology lab in one, they can do just about any cardiac procedure here.
There were only two things POST procedure that are a pain in the ass, getting an arterial line taken out is easy, getting it to STOP BLEEDING, is another story involving a huge amount of pressure, I like pressure, and time and sticky tape and dressings, which I don’t like.
They went up my right arm with a Transvenous Pacing (TVP) catheter instead of an Esophageal Pacing catheter because neither surgeon or anesthesiologist could pass it through my nose and into my esophagus, an issue to be rectified before the next study so all that needs to be inserted is an IV (if I don’t have one) and an arterial line, of course both while knocked out.
What I found really dumb, they inserted a SECOND identical IV to my current 20 gauge I have in my LEFT arm into my RIGHT hand, now whats the point of that??? Two IV’s one that never been used, sheesh! I told them to get rid of the second one shortly after waking up so I have two big bandages on.
I will be discharging TOMORROW afternoon. anyhow, time to hit the sa….. collar and fall asleep.
Oh and did I mention that MY DOCTOR NEEDS A PVC LEAD APRON NEXT TIME. GRAR! NEED MOAR SNUGGLES AND HUGS!
I miss wearing mine, should find out where dad put it… Only thing that I need to do is work on losing the vent and trach.
Ambulances only sign
No that sign is not from my hospital if you are wondering, it’s from . Anyway yesterday at 12:00 AM I began experiencing some stroke like symptoms. We waited it out and probably shouldn’t, that beeping that happened about every hour or so was not something in my room, it was my FAILED baclofen pump that had suddenly STOPPED pumping medication. Around 4 AM I was beginning to display severe stroke symptoms including slurred speech, impaired judgement, movement impairment, seizures / spasms (severe), and other stroke symptoms. at 10:00 AM a full code blue was called. City ambulance came and triaged me as critical, they diverted directly to Lutheran General Children’s Hospital due to my critical condition and having seizures and spasms up the wazoo that only LGCH could treat. they rushed me there within 15 minutes and got me into the ER where they found out that my baclofen pump FAILED, they quickly called in MedTronic’s techician who had it refilled by the neurosurgeon and then he reset the software, kind of like reinstalling your computers operating system… Hopefully it should work, currently I am now in PSCU but was in PICU overnight. I am still under extremely close monitoring. We are unsure if I sustained cerebral damage from the spasms / seizures. I had a MRI and CT scan yesterday, both came back clear but the MRI was only 1.5T and may not show the smallest details, let alone neuron bundle branches that may be destroyed. Thankfully all the stroke symptoms are gone, but I am much more spastic than usual and have seizures much more often. Today they ran an EEG and tomorrow they will be fitting me for a Passey Muir Valve so I can speak while on the High Flow High Humidity trach system. I was SO EXCITED when I saw the Ballert Orthopedics guy come in the room TONIGHT, when my doctor called in the cervical collar prescription this afternoon, talk about extremely fast service! They got me fitted in a Miami J, surprisingly a Small which they usually use for average pediatrics, they actually had a neonatal / x small pediatric collar fitting on me but they decided to allow larger access to my trach to use the other size. Just as I had expected it is extremely comfortable, the comfort of having 0 neck pain and the ability to just let the muscles in my neck go “Off-Line” like I do in my chair is so awesome. In fact I was supposed to finish this and post this BEFORE I fell asleep, but y’all can guess what happened.
Bloody early start today, I was up at 5:30 for a “Sleep Deprived” EEG, blargh! tomorrow will be similar, have to go to heart cath lab for diagnostic testing
Heres some before / after photos of the C-Collar
Me without the Miami J Cervical Collar
Me in my Miami J Cervical Collar
Anyhow it’s getting to be closer to that hour I get my meds and the collar on and well you know, I don’t want this post to become delayed ANOTHER day. 
We have a code blue, I repeat we have a code blue. My baclofen pump has failed or something else is wrong causing me to go into baclofen withdrawals. I feel like stroke symptoms, abnormal speech, movement, shivering and varioius other stroke like symptoms with cardiac involvement.
THIS IS A FULL CODE BLUE
I turned on my oxygen concentrator at 30% as directed by my pulmonary doctor when I have a saturation problem and went to sleep a few times for a few hours, one hour here then another our and so on. I am up now for a while so I can get my night meds nebs and vest treatment and will probably go to sleep finally around 2 AM like last night, a pretty reasonable time for me. I just turned off the concentrator to see what happens and my oxygen is staying between 97-100 which is great! Don’t need to listen to that rattletrap while I am sleeping.
Just wanted to share some last minute good news!
Our house is designed much like a hospital so it can handle a wide variety of emergencies, mainly respiratory emergencies.
Today we had two codes, our first code was in early afternoon and was a cardiac code, I was running a high heart rate for a good hour peaking at 150 stable at 140, we knew that I was in back and neck pain and decided to take advantage of a side effect of morphine, bradycardia. I came up with a new joke of calling Morphine Morphocard like Adenocard since it within 15 minutes of administration with a 60 CC rapid flush to my G-Tube stopped the SVT!
Just earlier I was having episodes of blacking out and then recovering and then blacking out, these episodes were accompanied by unexplained oxygen desaturations to a little below 90% so I am on the O2 concentrator right now. We have had these episodes before but not to the point where they would interfere with things like me sitting on the toilet, I ALMOST FELL OFF!!!
We will be talking to the doctors first thing on monday about these things! This was happening before I tried going “off vent” So I know that it has nothing to do with it, they are just conditions that need attention!
Me kissing my ventilator after a long time off
Your probably wondering why the hell I am found kissing my ventilator in this picture. I took myself off the ventilator in the shower for a few minutes, thinking I’d shave and plug right back in, but I decided to be daring and be monitored closely by the nurse a have the ventilator standing right next to be in standby ready to power up and plug in. In less than 5 seconds. I lasted an amazing 6 hours! Kira and her family saying Kira can handle periods off the machine got my gears turning and then my nurses astute monitoring and care made sure I stayed safe. After she left I lasted a whole nother 2 hours until my ETCO2 hit 40 and dinged off, I waited for it to hit 45 and my oxygen to hit 90% at that point I powered up the vent in less than 5 seconds and was back on. So far I did this on my own (the disconnect / switching off and on) as a nurse cannot legally do that for me without an order but as far as I know I can do it myself. I am going to call my pulmonary specialist to get the order changed to allow me up to 6 hours off of the vent in bursts or all at once depending on how I feel or just stay on all day, pretty much just an order to give me more flexibility with my ventilator. By the time I plugged myself back in I was extremely tired and relaxed to be back on the vent!
Disclaimer: I take no liability for any choices you make as a result of this post, please discuss all life support decisions closely with doctors & caregivers and research them carefully, while you DO have the right to make your own informed decisions they should be THOROUGHLY researched. Play it safe and avoid dying… dying is not fun.
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