4TH PATH : BRIAN FRANK STRONG

Hopping on with this week's updates. I'll keep it short and sweet: On 10/16, Brian's 33rd birthday, we were able to spend the afternoon outside with family & lots of friends!  Two weeks ago, Brian had a mini storming episode before I left one night. I bought Brian a ring that tells me his blood oxygen and heart rate and as I was leaving, I heard the alarm go off that his HR was in the 100s and he visibly started to look uncomfortable. The urgent care team came to monitor and they trusted my input and treated it as neuro-storming with a nitro glycerin patch and it solved his elevated HR and BP. He's been stable ever since! We are pretty certain it was triggered by allergies, but it could also be a random incident indicative of healing (hoping for the latter). On Saturday, Brian received the flu shot, which made for a sleepy weekend.  Tomorrow, Brian will go for a swallow test in the morning to see if we can start giving him blended solids (like apple sauce) and other...

I haven't updated because September was a whirlwind in so many ways. And I truly just wanted a moment to stop feeling like we are in a fish bowl and be take the time to be more in tune with myself and present with Brian. With our 3 year anniversary coming and going on 9/22, I was very much just trying to get 'through' it. Celebrating solo was hard. Best friends and family made it easier for sure, but anniversaries are special because they belong to the 2 people involved. And my other half is still unable to consciously be present with me. Quite a different anniversary than we had dreamed up or celebrated before.  But anyway - here's overall how the month went: After we got back into the brain injury unit at Shirley Ryan, they gave us a discharge date of 9/21. At that point, we had only been accepted into one long term care facility in Illinois, which was in Arlington Heights. It was (and is) a great option as they are newly renovated and just received a grant to do brai...

We made it back to rehab Thursday. It wasn't without a fight, no surprise. I'm so tired of fighting hospitals. Overall, I guess Brian is an anomaly to the doctors, which I suppose I'm not mad about because I always hear my mom's voice in my head when things don't go according to plan..."God works in mysterious ways." So they kept him admitted for about 5-6 days to monitor his heart and run every test possible. Everything turned up normal. No complaints from me, but also maddening because he was just losing days of rehab, laying in a bed. The low heart rates resolved and Brian was stable as all get out. Their solution was to slightly adjust some of his meds and that's about it. Friday I spoke to a few different doctors and they are now concluding that since Brian is a fit guy who was active pre-injury, they believe his lower resting heart rates to be attributed to a healthy heart, since all the bloodwork and tests they've run are normal. So at this ...

I don't count the days anymore. I just try and take it one day at a time and ignore duration of time passed because it's irrelevant and all happening in God's timing. For those of you not following along via my Instagram stories... After the covid test saga, we returned to rehab and Brian had a great week. He looked really great and everything seemed to be getting back to normal. We discussed a discharge plan for mid-September, which is still a work in progress (the short story - they feel they've exhausted all they can do medically for Brian and he just needs more time before he can return and participate in therapy once he's further along and awake). The good news is I believe we have found a local facility in Illinois that might be a good fit. There are a couple of options I'm exploring and feeling good about (but I mean...let's keep praying that God decides to wake Brian up between now and then, am I right!?) Anyway, after this past hospital visit with t...

I'm not really sure what to update on because the last month has become a fog, but I'll do my best to highlight the major stuff. 2 weeks ago today I woke up to an early phone call letting me know that Brian was being rushed to the ER with an elevated heart rate & respiratory rate, a fever, and a declining blood oxygen level and low blood pressure.  As you can imagine, my worry overwhelmed me - praying for him to stabilize and praying that our ER visit would be attentive. Luckily, as soon as I got to the ER I found him in an observation room where doctors and nurses were constantly tending to him (thank god). He was fairly stable by the time I got there and they admitted him within a couple of hours.  They diagnosed him with aspiration pneumonia & tracheitis (and at that point we believed he also had shingles). On day 2 of his admission, the 'shingles' rash disappeared completely. Both swabs tested negative for it prior to the treatment, so now no one believes he...

I'm exhausted. Last week really has my nerves wrecked. The ER experience was unacceptable, disgusting and negligent to say the VERY least. Something that was highly avoidable that almost cost Brian his life. In a nutshell, Brian experienced neurostorms throughout the course of 25hrs that became more severe and more frequent and the ER staff told me to 'calm down' and 'wait our turn' while they left him on an ER cart. They did not tend to his needs as a minimally conscious patient. They did not replenish his meds or fluids when his g-tube leaked twice. They did not rotate or turn his body unless I asked. They cancelled his order for nutrition when I left to catch a couple hours of sleep. They dropped the suction piece on the floor several times and still attempted to use it in his mouth (I did not let that happen).  When Brian was finally admitted, he was near critical (heart rate 180, temperature 104, sweating/bright red, postured, pupils blown, gasping for air). An...

 We spent 25 hours waiting in the ER for Brian to get admitted for long term EEG monitoring. While there, overnight Brian's episodes worsened. He's either sleeping or having a severe episode (muscle tightening, shaking, hot/red skin, elevated heart rate and respiratory rate, elevated blood pressure). Id say they happen about every 20-30 minutes now. I called everyone I could think of - the current hospital case workers, medical directors, charge nurses. His previous hospital doctors, his rehab hospital. I fought to get him admitted or moved all night and day while I watched him suffer. We finally got him in the room, after lots of tears and anger and lost sleep. He's currently getting the EEG probes placed as I type this. I'm exhausted and scared. And I'd like to recruit our army of people to lift Brian up in prayer over the next 24 hours. People covering him throughout every hour of night and day for a full day. I'm asking for 24 people to cover each hour so we...