Alin's Site

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.