Meningitis: All I Never Wanted To Know

Meningitis. Isn't that something teenagers get from the locker room? That's pretty much all I knew about meningitis - until I got it.

I am almost 50 and certainly don't visit locker rooms. I am the mom. The wife. The grandma. The chief cook and bottle washer. I do things. I take care of things. I take care of everyone else. I don't have time or money to be sick. I don't have insurance, thanks to obamacare. I don't go to the doctor unless I think I am dying. And as a rule, I am not sick that often. I don't have any health issues- no high blood pressure, no diabetes, etc. But sometimes all that doesn't matter.
It started on a Wednesday, and possibly before that, as I lost track of several days. I was around my son, who had fever, and what we thought was probably a cold or flu, this was on Sunday. I felt kind of crummy, and figured I was getting whatever he had. That's pretty much the last memory I have until I woke up in the ICU the following Sunday.
Apparently I stayed home from work on Thursday, which is unusual. My husband thought something was wrong, but said I insisted I was fine and didn't want to go to the doctor or urgent care. And he said I was moaning and making weird noises (noises we now know are signs of meningitis).  My mom called to check on me, and  my husband said I didn't want to talk to her, which I would normally never do (you have to talk to your mom, no matter what, right? I was up and down all night Thursday. And I am told I made lots of cappuccino and toast through the night (it's a wonder I didn't burn down the house!) And the moaning and noises went on all night. He said he asked me why I kept making the noises, and I said I couldn't help it.
By Friday morning, I was too weird to ignore, and was "combative". My parents came over to have a look and everyone decided I needed an ambulance. The paramedics wrestled me from my bed to the gurney and from that time on I was tied down. One of the paramedics said it looked like meningitis, and by the grace of God, that info was relayed to the ER staff.   And it was no coincidence that the ER nurse who attended to me had some clout, and had had two prior meningitis patients, both with sepsis, and she insisted on starting steroids. Of the two prior patients she had, one did not survive, and had not been given steroids. So, that alone probably saved my life.
After testing, I had (I hope I'm phrasing correctly) pneumococcal bacterial meningitis, and a test of my spinal fluid showed sepsis. Apparently I had an inner ear infection, causing my ear drum to burst, allowing bacteria to enter my brain, and once there, it is free to multiply with little resistance. They pumped me full of steroids and antibiotics, and loaded me up and took me to the ICU in Springfield. This was Friday.
Once there, they put me in a medically to induced coma to allow my brain time to heal. I was intubated, of course, and also had a feeding tube in my nose.  They told my family it would be 7-14 days before I would wake up.
And then they began to tell my family what outcomes they could expect. (Tears flow every time I think about this. God spared my life, and though I don't know why, I am so thankful!)  They said one in three don't wake up at all. And if I woke up, I could have stroke-like symptoms, damage to motorskill function, brain damage in cognitive areas, memory loss, vision loss, hearing loss, and a number of other things. The prognosis was not good. Periodically, they would reduce the sedation to see how I behaved, and if I could obey simple commands. My hands were tied down because I would try to pull the tube out of my throat. I feel so bad for what my family must have gone through during this time.
On Sunday, my husband had come from the waiting room to the icu and spoke with the doctor in the hallway, who said, there's just no way to tell when I would wake up, and it would probably be several days. He continued to my room, where he pulled the curtain back to hear the nurse say "She's looking for you. She's awake."
My first memory is my husband asking if I knew where I was. Of course I didn't. And I don't remember much from that day, but according to my family I was obnoxious and tried to be funny and make jokes - I'm sorry to the ICU nurses, I'm usually pretty reserved. They asked me many questions- my family's names, dates, places, etc. I remembered most things, but not the grandbabies! How was that possible?! Thankfully that was only temporary!
I did well enough that they moved me to a regular room on Monday night. I was very unsteady, and required a walker to get around (I thought those were for old people!) I was able to convince the physical therapy guy that I was fine and needed to go home.
They had placed a picc line (peripherally inserted central catheter) right below the bicep of my right arm, for administering my antibiotics, as they weren't sure how long I would be there and it goes directly to your heart in the event the need to get something in your really fast. They let me go home Wednesday night.
Thursday morning a home health nurse came and showed my family how to administer my medicine. Of course, I am a worrier and fretter, s when they said ,"Now, this goes directly to your heart, so you really need to be careful about germs, and really shouldn't touch the end with your fingers." That gave me one more thing to be paranoid about. Anyway my family managed to do it without killing me. We did that for 7 days or so, twice a day. And showering was quite a feat, as I couldn't get the picc line wet. So the wrapping and taping process was long, and let me tell you, that medical tape sticks! I can't be sure, but I think I have about 7 less layers of skin on my right arm! My dad was wrapping once, and I was trying to explain that the least amount of tape touching my skin, the better. He didn't fully understand until it had to come off -not very fun!
Finally I had my appointment with the infectious disease doctor (I have to admit, I felt uncomfortable sitting in his waiting room-what if I caught a disease?) Anyway, my blood work looked great. So they removed the picc line and sent me home with oral antibiotics. And told me I didn't want to get an air embolism where they removed the picc line, so I had to keep antibiotic ointment and a bandage on it for several days. One more thing to be paranoid about. And what exactly is "several" days?  It was nice to be able to let my skin grow back on my right arm, though!
My next trip was to the ENT. He showed me a scan of my head. I was happy to see I did, in fact have a brain in there - I was worried there might just be a handful of peas rolling around up there!  Having never had my head scanned before, we would never have known this if I hadn't gotten meningitis, but a section of the mastoid bone in my ear is missing on both sides, and my brain actually "drooped" down into my ear canal and is currently sitting on the tiny bones that are supposed to vibrate, and then send sound signals to your brain. For some 15 or 20 years I have tried to explain to different doctors that all I hear is me, my voice. When I talk, it sounds like I'm yelling. And when I talk or chew, all I hear is me -it drowns out any external sound. And I sing. When I start to sing, I can't hear the music, other singers, etc. I only hear me. God has given me the ability to stay on key, I guess, as no one has ever told me to knock it off. Anyway, this requires surgery to correct. And I have a spinal fluid leak they will repair as well. They will basically cut my ear loose from my head and graft cartilage and bone from my ear and skull and attach to my existing mastoid bone, while lifting my brain back up where it belongs and then sew it all back together. Kind of gross, but I'm ok with it until my mom asks about side effects. I could have a stroke or seizures for the rest of my life from lifting the brain. Now I am having second thoughts until the doctor says I don't have a choice. If I don't have the surgery I will most likely get meningitis again and might not have such a good outcome next time.
So, my surgery is two days from now. I am trying my best to squelch my worrying and exercise my faith that God will take care of things. I will once again be totally incapacitated and have to rely on my family, which I just hate having to do, but I know they will take good care of me. And I realize all the other crap in our lives - money, stuff, activities, etc, is just crap. What matters most is (1) that you know where you will spend eternity in the event you don't get to see tomorrow (I will spend my eternity in Heaven with my Saviour, Jesus Christ), and (2) your family. Family is our greatest treasure here on earth, and God's greatest blessing!
Please say a prayer for me. Sorry this blog is so long,  Just wanted to get everything in before my surgery, you know, just in case.

I'm Going Postal!!

I am really close to losing my mind over the United States Postal Service!

I can't say enough good things about our local post office.  They are always most helpful and courteous, and very professional.  I have no complaints whatsoever.

The entire postal system, however, is another story!  I shipped a package 13 days ago. I sent it priority 2-day mail.  I checked the tracking number each day.  The only information it showed was a scan when it left my local post office. On the fourth day with no tracking updates via the internet, and the package not received by the recipient, I phoned the number on the usps website.  After entering a thousand prompts and numbers, I am told by a recording that if I leave my number, someone will return my call according to my place in line.
Sure enough, they call me. They ask again for all the information I spent 20 minutes entering earlier, which I give them.  The customer service lady says, "Well, it looks like it was scanned when it left your post office, and is currently in transit."  I said, "I know that.  I just told you that's what it said on the internet tracking.  But I sent it Priority, 2-day and it's been 4 days." "Well," says the lady, "there's really nothing more we can do until it gets scanned somewhere else.  And you have to wait 15 days to file a claim."

It has now been 13 days and I can't wait any longer.  I call our local post office.  They are most cordial and apologetic.  They give me an 800 number to call, and tell me it will launch an inquiry into where it should have gone after it left here, so they can actually check with the next-receiving post office.  Guess what?  It's the same place I called before!

I call, enter prompts and numbers for 20 minutes, and again am told it's better to request a call-back instead of waiting. So, I leave my number.  I am on the phone with a customer when my cell rings, it's them and I missed the call!!  They call again. I say, "Hello."  The person on the other end says, "Ello. Theez eez (some unrecognizable name) weeth thee Uneeted Staats Poostal Surveez. Ow cun I elp you?"  I'm like, really?  The United States Postal Service can't even hire someone who speaks understandable English?  Is this person even IN the United States?  So, after several huh's and what's on my end, I finally understand they will start a claim and investigate.  I am given a claim number (which I am still not sure I understood correctly) and told someone will call me shortly.

No one ever calls, and I am unable to speak with anyone else about it.  Finally, 25 days later, I receive a refund check from the postal service.

And 43 days after the original mailing, guess what I find sitting on my porch?  The original package, undamaged and obviously unmailed. I don't get it. Where had this package been for a month and a half? And why could no one find it?