Family Emergency Status Update

[RPA-1 Man 546]

This is terrible. Keeping Jen in our prayers. Don't worry about anything here Greg. There are lots of good people to watch things while you need to be away. Family first.

[itchitch 3,224]

Sorry I missed your birthday Greg...

 

Jenny in my prayers every night (unfortunately there is a long list)

 

This is the month of miracles... 

[Walrus Gumboot 288]

I just saw this...I am thinking good thoughts for you and Jenny.

[oakley104 460]

Greg, You and your wife are in our thoughts and prayers.  Sounds like your wife is in good hands and is receiving the medical care she needs.  Please be sure to take care of yourself, stay focused, and be safe out there...

 

Take care

 

[Nahash5150 9,343]

So after a long, terrifying stay at the hospital, Jen ( @The Raven ) is starting to recover.

 

It's been confirmed that she has a nocardia bacteria infection. The infection spread from her lung to her skin, and then to her spine and brain, while being sick with a cold virus (perhaps coronavirus, but she tested negative and positive while being sick).

 

She fought a 'severe cold' for weeks at home, and after 3 ER visits, a doctor finally noticed neurological trouble with a simple test (her arms would 'float', much like an infant, and her eyes could not focus. She would get dizzy and vomit when she sat or stood upright). During her time of sickness, she would run a high fever and get so weak she couldn't get out of bed (which made me think she was in a fever daze). But she would eventually recover slowly, making us think it was all getting better. But she would have bouts of severe migraine attacks, and it would flatten her again. This happened for weeks (hence the 3 ER visits). On ER visit #1, she was diagnosed with COVID and bacteria pneumonia. We were told that this explained the symptoms (severe migraines, weakness, fever, aches, cough, skin lesions, etc).

 

After being sent for a CT scan on ER visit #3, the doctor tells me she has spots on her lung, spine and lesions on her brain and would need an MRI downtown (Spectrum Health in Grand Rapids).

 

"Could be cancer, necrosis or an infection."

 

Jen unfortunately writhed in agony for 36 hours in the ER while waiting for a bed in Grand Rapids. I stayed with her the whole time.

 

Her MRI revealed hundreds of lesions on her brain. Her status in the hospital was up and down - she would start to get better, then get migraine attacks that would cause her to pretty much lose consciousness for a day or two.

 

Doctors theorized the spots on her lungs were connected to the lesions on her brain and conducted blood tests, a bronchoscopy, PCR tests, a lung biopsy and more MRI's. After ruling out Tuberculosis, Cancer, HIV, etc - they still didn't know what was going on, especially since she was by all accounts very healthy (no diseases, not immunocompromised, etc). All the while, Jen was experiencing a lot of confusion, extreme pain and sometimes delusions so I had to stay with her everyday. Most of the time, she could not answer questions more complicated than a 'yes' or 'no'. The injuries to her brain caused her to 'reset' and she was in an infant-like state. Although her long term memory and senses were still in tact, she has lost the ability to coordinate them. Moving, talking, and thinking were extremely difficult and taxing. She was just 'out of it'. But since I was there everyday, I would help her try to rebuild her sense of awareness, and brought props from home that she was familiar with to help with confusion and such. And of course she had her favorite plushies to help too.

 

Blood tests eventually revealed the presence of nocardia bacteria. Chances that nocardia caused the lesions were greater than 50%, but because there are over 80 different species of nocardia, each one with different sensitivities to antibiotics, they had to know more for effective treatment. She was fed 4 to 5 powerful antibiotics via IV all day and night. All varieties that were known to be somewhat effective against nocardia, but also with possible severe side effects, so she had to be closely monitored.

 

Since no bacteria had grown for the biopsies, they were left with little answers. So they recommended a cranial biopsy to sample a lesion. We agreed, and she received the operation.

 

After about 10 days, the brain biopsy started to grow organisms in culture. This was sent to the State Health department for identification.

 

Nocardia can take weeks to grow, so the long wait was not unusual. Just yesterday, organisms started to grow from a sample of her lymph node taken weeks before.

 

She has since recovered steadily since the brain biopsy. Likely due to the massive IV antibiotic storm along with her tremendous resolve. She will require at least 3 more weeks of IV antibiotics, then a year of oral antibiotics that target the exact species of the bacteria once it is known. The Infectious Disease specialists still don't know how this all happened. They say that Jen is completely new territory. There are no cases like hers. Nocardia is not known to seriously affect healthy people, and it also has never been seen to cause so many lesions on the brain. The fatality rate of brain infection from nocardia is about 80%.

 

And then there's all the bills and insurance crap and politics to deal with...yippie...

 

But I can't express my relief. Just to be able to talk to her again is a blessing beyond expression. It looks like she will fully recover...she has been miraculously strong during all of this.

 

She was transferred to Acute Rehab Therapy yesterday, as her medical condition is finally stable. She can eat and walk on her own now - feats she could not do just two weeks ago. And of course, my Jen is finally back - cute, stubborn and very demanding...

 

It will still be a very long recovery, but she is expected to make it home in a week or two.

 

Thank you to many of you for contacting us and offering support. EVERY LITTLE BIT COUNTS. For a long time, everything was hard for me as well...my house was totally empty...and for a while I had no idea what to do or expect. Things are better for me as well, and I hope to get things back in order starting today.

 

So while Jen is improving...I have other disasters to fix now!

 

Thanks again for reading about our story...so far.

 

Picture Journey:

 

I took this while she was waiting for an MRI. At this time, she could not do much. The bandages were from EEG to ensure she wasn't going into seizures.

 

 

After cranial biopsy. She was starting to move a lot more and eat on her own by this time (about 2 1/2 weeks in the hospital so far).

 

 

A huge leap forward. Eating on her own.

 

 

I would take her for short strolls around the hospital and we would site-see and get coffee. Since I used to work in this enormous hospital campus, I knew my way around. It was a very special time to spend with her. She was able to leave the room and I'd talk about all the different areas of the buildings, some of which are really cool. 

 

 

One of her favorites, Princess Luna, helped her a lot.

 

 

Cuddling with another companion, Sir Charles. Simple things like this meant the world to her as her brain healed.

 

 

 

Many lessons learned...

[Receiver2000 1,779]

Thanks for sharing this Greg. What a heartbreaking story about Jen's (and your) experience. It must have been terrifying. I pray that her recovery continues. Stay strong!!!

[Buck115 182]

Thank you for the update! Truly answered prayer and my prayers continue for you and Jen!

[4krow 3,845]

  You have told an incredible story. BTW Jen is a beautiful woman. Remind her of that. It is good to hear the positive aspects that we have every now and then. 

 Some of us out here have had emergencies, but God, not at this length. And I am not going to compare stories except to say that one or two of my life changing events led to very positive outcomes.

 I feel a lot of this very closely, as do others here and honestly hope for the best outcome as time progresses. Please keep us up to date and thank you for the photos they were exceptionally helpful.

[Daddyjt 8,354]

Dude - this is beyond great news.  Best Christmas gift of all.  I’ll call you in a couple days to catch up.

[Ar9Jim 3,837]

Such great news. OMG what a ride you 2 have had. So thankful Jenny is back with you Greg. Prayers answered. 

[danowood 2,079]

Jesus Greg, that was and is a scary story.  I don't think they know all that has escaped Pandora's box with Covid.  I'm just glad that she is doing much better, and how relieved you must feel after her surviving this ordeal.  The odds were so totally against her, and she beat the odds.  It just angers me how and if we will ever know  the truth about covid, and the vax's.  BTW was she vaxed? I wish you both the best that life has to offer for the remainder of you time here on earth.

[Dennis47 734]

Wow! What an ordeal. Great news about Jen. Prayers work...

Thank you for the update Greg.

[weitrhino 1,385]

Wow! That’s quite a saga! Jen indeed benefit from your constant vigil and attention. So glad to hear the corner has been turned.

 

 

 

 

 

 

[itchitch 3,224]

Greg,

Thanks for the update. 

I pray that the positive momentum continues and that her pain subsides.

Keep the faith.

 

Steve

[oldtexasdog 2,297]

Outstanding! So good to hear.

[AndrewJohn 6,259]

Prayer, of any kind, works.  And all that great attention from expert caregivers that are human, but never give up.  Like pulling a string, eventually, if one keeps pulling with more questions, it leads to the cause and solution. 

 

Jenny @The Raven is lucky and blessed to have you there.  I know the feeling well in that kind of setting with the number-one most important person on the planet.  

 

Prayers for full recovery and thankfulness will continue.

[Nahash5150 9,343]

So far she has been comfortable in Rehab. She appreciates the fact she can sleep at night, without all the poking, prodding and IV pump alarms. She was assessed yesterday by Physical Therapy and scored a 50 out of 57, which is damn good for her first day. They still require her to have supervision to get out of bed. If she were to fall and bump her head now, it wouldn't be good...

 

Still doesn't tamp out her annoyance that she still can't 'be on her own'. Given that she's pulled out IV's and tubes and stuff throughout this ordeal, I still have to council her to take it easy. She has her bull head back, but not her patience...

 

By the way, I forgot to mention the prevailing theory of prognosis:

 

Nocardia is ubiquitous in soil, especially compost and rotting plant matter. It is an organism of opportunity and not known to infect healthy people or animals.

 

Jen is a prolific gardener. She worked really hard this past spring and summer on seedlings and tress.

 

She had muscle spasms on her right side a couple times during the late summer. Ice packs and a massage helped, but we assumed it was probably a pinched nerve or something. We made an appointment with a chiropractor in October.

 

She developed a dry cough during the summer as well. She thought maybe it was mild bronchitis from working in the shop with soldering and stuff.

 

Around October 20th, she started to feel sick. Aches and pains, a cough, headache, and a slight fever. People in the area were getting sick with an 'unknown cold virus'. It didn't seem unusual.

 

During the weekend of October 21st, she was feeling even more ill, with severe migraines triggered by coughing or exertion. Her temp would get pretty high, about 101, but still not alarming. We continued with home remedies and therapy. However, she broke out in a pretty dramatic skin rash, well, more like large pimples all over her body. Since she doesn't take pain meds much, we assumed it was because of Advil and/or Tylenol Cold and Flu we tried to help her get sleep. She's had a history of rash from ibuprofen before.

 

I got sick the next week. Nasty sore throat, cough, aches, fever, etc. Jen was feeling well enough to care for me on the first day, then she got really sick again...

 

The rest is history...

 

So it seems that, the muscle spasms were from an infection starting in her lung (lower right side near the ribs). Nocardia can 'sleep' in the body for long periods of time. Since she has a good immune system, it seems here body contained it, but for some reason wasn't able to eradicate it. This explains the coughing as well. Mild pneumonia.

 

The cold virus sickness triggered a systemic nocardia infection. The skin rash/pimples she got early on was the nocardia spreading into the skin. The severe migraines were the infections spreading in here spine and brain.

 

 

 

3 doctors missed it. I'm still frustrated about that. COVID seems to allow too many assumptions. That is, all symptoms seem to be tied to it, no matter how severe. This is a serious problem I think. Considering her condition at the time I brought her to the hospital, she was displaying serious neurological problems...she should have been examined for this. But she never was.

 

'Ah well, COVID does stuff like that' is all we heard.

 

Wrong. COVID is just a cold virus. People can still have other problems that are unrelated or triggered by the sickness.

 

 

 

Learn basic neurological tests. Brain problems are very serious and doctors obviously don't catch them all the time. It's worth knowing so you can give your loved ones a quick test to discover early signs of things like stroke, tumors, etc when they aren't feeling/doing well.

 

13 hours ago, danowood said:

Jesus Greg, that was and is a scary story.  I don't think they know all that has escaped Pandora's box with Covid.  I'm just glad that she is doing much better, and how relieved you must feel after her surviving this ordeal.  The odds were so totally against her, and she beat the odds.  It just angers me how and if we will ever know  the truth about covid, and the vax's.  BTW was she vaxed? I wish you both the best that life has to offer for the remainder of you time here on earth.

 

She is not vaxed. She may or may not have had COVID. The cold was pretty bad, but not unmanageable. I got sick a week after she did. It 'felt' like COVID, but I wasn't tested. Home remedies defeated it pretty easy.

 

So if it was COVID, then COVID is easier to cure at home than I thought!

 

The story above makes it pretty clear her most severe symptoms were not COVID related. I suspect that is the case with MOST people who are diagnosed with COVID who get very sick, including 'long COVD'. There's too much attention and fear surrounding the virus.

 

It's the scary media monster everyone is afraid of, so it's the monster that 'the village' hates enough to blame for everything.

 

I had long discussions with Infectious Disease specialists about how COVID could have played a role. They were not convinced COVID had anything to do with it, at least in particular (that is, the same phenomenon could have been triggered by any cold virus). Although, they are still looking for answers since this is a totally unique case.

[Balok 1,345]

Wow, what an ordeal to live through.  I am so glad Jen is improving.   

[RPA-1 Man 546]

Great news! Thanks for the update.

[denniswilson 120]

Thank you Greg for sharing yours and Jen's painful and extremely difficult experience.  Thank heavens your beautiful wife is on the road to recovery.

Continued thoughts and prayers to you and Jen.

[4krow 3,845]

 I have seen misdiagnosis all of my life for about as many sicknesses as I can think of. No doubt some things have improved though. What strains me is to understand how some very simple sicknesses/infections can be overlooked or worse, mistreated. 

[Sk1Bum 9,272]

Thanks for the update Greg. I'm so glad to read that Jen is on the road to recovery. Still praying for y'all.

[frenchguy 70]

Happy to hear she is starting to show positive signs greg!! we will keep you both in our prayers for her continuing recovery!  hopefully soon she can be home and continue to improve by the day!!! Family means everything snd your first job is taking care of that!! Please let her know that there are many people praying for her recovery!!  Al & Melody Rougeux

 

[PhilDent 1,594]

Apologies If I missed it, but how can we support you? Is there a caring bridge or something similar?

[Rob 3,475]

Just got a message from Greg saying he was going to bring Jen home. Such great news