Life After Meningitis – Day One!
May 2010…After another 60+ hours clocked in at work by Friday evening I just wanted to head home to spend my weekend with my family. Spring sinus and allergy issues are a normal occurrence for most people, including me and Friday I was starting to feel some allergies start up. I didn’t think anything of it.
By Saturday my ear annoyed me a little bit but I continued with our weekend plans as well as put in a couple more over-time hours just to prepare for a Monday morning project meeting. I finished my time card, emailed a project status report to the suits, and made dinner for my boys.
By Sunday morning, my ear was irritating and extremely painful. A definite earache and dizziness ensued as we started our today. My ear popped every time I tried to talk or eat. I felt fine otherwise – so we went out to brunch (I barely ate) . We were going to head out to play a round or two of miniature golf, but after eating a vertigo dizzy spell and a slight headache became too much for me to bare , so, I let my boys go miniature golfing without me.
The headache wasn’t alarming at first as I would get Migraines all the time – this headache, however, was strangely different. During a Migraine I would get auras and pain on one side of the head just above an eye. This headache progressed very quickly, within an hour or so it felt like a sharp knife was jamming through my entire skull into the center of the brain and my neck and shoulders hurt and I could not bend my neck.
Somewhere over the next hour or so after the boys left to go golfing I called the boys back home to take me in to ER for a Migraine shot. (Thinking that what it was- just different) I barely remember them coming home to get me. I only know what I’ve been told about what happened next, until waking up in ICU a few days later.
The Hospital visit – my husband took me to urgent care, Urgent Care sent me to ER. I had a 104 temperature and rapidly climbing. I was lucky that another doctor was passing the ER bay and overheard the description of my headache and neck pain. He jumped in and started a string infection tests and blood work ups. One of the Infectious Disease tests was a Spinal Tap. I was in so much pain they started the Spinal Tap without pain meds – they said I didn’t even flinch or groan when it was done.
All these tests came back Bacterial Meningitis (a brain and spinal fluid infection) as a complication of both Otitis Media (Earache- eardrum rupture) and Sinusitis. My doctors next hurdle was trying to find an antibiotic and steroid combination that would stall and fight the infection. The issue was another allergy that prevent me from taking the normal prescribed medicines to fight this type of infection. Both Doctors and my husband said it was touch and go for the next 48 hours or so. Would I make it? Would the meningitis react to new medicine combination or would I develop a similar allergy? They didn’t know! Looking through the list of drugs and treatments they tried throughout the first night in ICU (from my itemized bill) it seems they tried a little of everything. Viola! They found a combination that worked and started fighting the infection.
Monday – Tuesday went by….
By Wednesday I was finally awake with doctors telling me they needed to do an ear surgery to drain the rest of the fluid in my inner ear and adding tubes. My Mom came sometime Monday afternoon and stayed with me but I hadn’t realized she was there until after fully waking up Wednesday. The late evening ear surgery went well and I was allowed to sit up in bed Wednesday night – though briefly until getting another dizzy spell.
On Thursday my son finally came to see me. I was happy because he wanted to walk with me and he really just wanted me home – he missed me. So earlier in the day, I tried to stand and walk.
Walking – Somethings people take for granted every day seem challenging when you have a major brain trauma. Standing up was one thing.. getting my balance to stay up nonetheless walking was another.
Walking seems so easy until you have to tell your own brain how to do it.. You see people walking everyday around you…, but for some reason I would stand up and the actions in my head weren’t coordinating with my brain to my legs and feet. It was infuriating to say the least. I was standing there looking at my feet – in my head yelling at them to move – to walk – Damn it just do it. After some work and a few times yelling at myself and trying to get things moving everything finally connected. It was getting the loose connections reconnected.
My energy on the other hand was very low -my body was still fighting the infection. When my son came to see me I couldn’t do much with him and he laid next to me in bed watching TV. Just before he left we did a short walk around the hospital corridor.
Everyone went home for the night – I tried to nap and rest but with the nurses coming in every hour or so. That is not possible! Thankfully the nurses did come around because the very lucid dreams and hallucinations I would have the first few nights after waking up were terribly frightening. Months later, looking through my cell phone I found a video I recorded of me cursing at the IV drip monitor asking the IV machine why the nurse hadn’t fixed it (him) yet. My poor nurses had to put up with that crazy..
Somewhere in the next couple days I learned to walk stairs- if you thought just walking was challenging – stairs were more so.
More firsts – My first time outside in about a week and a normal meal- not from an IV. The afternoon before getting released to go home a PICC line was put in my arm to continue at home care. I would do the first at home infusion into the PICC line before leaving the hospital then a nurse would come the next morning to set up everything in my home for the rest of my home care about a month long.
A new set of learning began at home.