Jenna’s road to recovery

Hi everybody, the fact that you clicked on this GoFundMe link is hugely important to us. It tells me that you want to help, and if you’re able to help, we would greatly appreciate it.

If you don’t know us, I’m Joey, my wife is Jenna, and our awesome kid is Zander.

Jenna’s medical complications began near the end of September, albeit manageable, she was steadily declining all through October, through November. She took a drastic turn for the worse roughly the last week of November/first week of December. By this point Jenna had already lost roughly 60lbs.

Her vision started to get blurry and she was having spats of double vision. At the same time, she had developed extreme weakness of her legs, to the point that she’d need help walking anytime she’d get up.

After repeated visits to Hopkins ER only for her to be dismissed as dehydrated, given fluids and told to eat, it seems the damage had already begun.

Jenna went to a different ER this next hospital trip, mid-December, and was admitted. We never failed/forgot… we always made certain that the nurses/drs doing their work up of Jenna heard about how her vision and leg weakness is something she’s never had before, that it’s relatively new dating to the beginning of December. The medical team seemed hyper focused on getting Jenna’s gallbladder out, but needed her potassium levels up, so once they achieved that, they did a Cholecystectomy. A day or 2 later is when one of the medical team paid enough attention to Jenna’s eyes, the Nystagmus she’d developed about the time she arrived at the ER, was now worse, and they were concerned. They started a full blood panel and the entire medical team came in, 2 white coats and multiple in blue scrubs. A full battery of cognitive exercises, checking her muscle control/strength. Never telling us what they were looking for exactly. Only ever half answers.

Me being overly curious and extremely anxious in the middle of the night, I went on the google machine, googled multiple of the more concerning symptoms still present and the first thing that I stumble onto is Wernicke’s Encephalopathy.

I made sure to ask about this first thing the next AM. One of the white-coats confirmed that is the main concern now, and one of the blood tests they sent out, but it could take about a week, especially because it was Christmas weekend.

Results took a while but eventually came back “negative”. They then had in-patient neurology consult, which they ordered more tests. I think at this point she’d had 2-3 different MRIs, 5 different CTs, a handful of X-rays, and certainly close to 100 vials of blood drawn for testing.

its December 28th? and Jenna is told that she would be better served by an academic institution, somewhere like Hopkins or UMD.

It’s now January 6th and this in-patient stay was only productive regarding her acute pancreatitis, which they believe was caused by repetitively passing gallstones, clogging a duct to the pancreas. They transferred Jenna to a rehab facility to get her assistance with her inability to walk independently, as well as get her speech therapy (which they do pretty much all things from the neck up, who knew?), and occupational therapy to help teach Jenna compensatory methods for doing day-to-day life.

Although we had bad luck with Hopkins ER, we hoped we could get in with their Neurology department, as they are known around the world as one of the best academic institutions. We somehow managed to get in the door, with the completely wrong doctor from an appointment request through her in-patient stay but we were grateful to get in so quickly. This Wilmer Eye ophthalmologist ordered imaging that he knew a Neuro-Ophthalmologist would want, got us an appointment with a more appropriate specialist for 2 weeks out, which got bumped up to being only 8days later, and a referral for Neurology.

8days pass incredibly slow, we go to this Neuro-Ophthalmology appointment and left heart broken. We aren’t going to cancel the Neuro appointment scheduled for another 10days after this appointment, but this specialist reviewed Jenna’s Brain MRI and his findings are that she has damage to her Thalamus. He tells us the damage he sees isn’t something that will heal, stating that this seems to be exactly what I researched. When he said this is Wernicke’s Encephalopathy, my heart sank. He believes the reason for her being diagnosed legally blind is that the nerves making up the optic nerve are damaged and thinned out, not the optic nerve itself as we’d been told by multiple eye doctors during her in-patient stay that the nerve was healthy, which he confirmed but suspects the damage could worsen and the optic nerve could wither as well. This is all due to W.E.

If you’ve made it this far, I am grateful that you’re empathetic/sympathetic enough at least read Jenna’s story.

The reason for the GoFundMe, as much as it crushes my pride to say it, as a husband, a father, and as a man, I’m currently unable to afford all the bills we’ve racked up even though we have health insurance, not to mention keeping up with our normal monthly expenses. Jenna’s 2 stays, Hospital and Rehab, total nearly $100,000.

I’m asking that if you can, any donation would help and be immensely appreciated. I am withdrawing my 401K, which isn’t much but I can’t expect to ask for help and not run down every avenue possible first.

I’m sure that any kind words you have Jenna would be elated to hear.

Thank you for your consideration!