Desolate. That's what I am right now. I desperately need Jesus and faith and the warm embrace of our family and friends.
I'll just start at the beginning...
On Friday night, November 22 (so technically eaaaaaarly Saturday morning), Joseph and I had an average low-key Friday night. We put the girls to bed, Joseph went and picked up hot wings for dinner, we ate dinner, watched TV, and fell asleep on the couch. Jojo woke me up that morning around 2:30 saying his left leg was numb. "What do you mean your leg is numb?" "I don't know. But it's numb". I could tell by the tone of his voice that something was very very wrong.
Soon after the numbness traveled up his left leg to his neck then started on his right foot-slowly moving up until his ability to speak was gone. He was slurring his words and almost didn't get out the words, "I think I'm having a stroke". I immediately called for help with the girls and then 911. An ambulance arrived about five minutes later and by this time Jojo was able to feel all his limbs, but still had incredibly slurred speech. Upon arrival, the EMT took his blood pressure which was 180/100. They asked him the date and the year, neither of which he knew, followed by the current president, which strangely he knew. At this point he was alert and oriented and was able to carry on a conversation, although it be with slurred speech.
We took the ambulance to Midland Memorial Hospital where they immediately did a full stroke work up on Joj. His CT scan and chest X-ray all came back normal. While we were in the ER Joseph lost his ability to hear out of both ears for about twenty minutes. He went through a period of time where he was extremely irritable. Then all of a sudden he had a massive headache hit. He was sensitive to light and noise and even vomited. It was terrible. We were sent home about 6 hours later with the diagnosis of anxiety and advised to follow up with a neurologist.
In the span of two weeks, Joseph had attacks similar to the ER visit, but on a smaller scale. He would wake up in the middle of the night (between 1-3am) with numbness on one side followed by an intense headache that no medication seems to touch. He didn't work the whole week of Thansgiving; the attacks make him fatigued and weak. Over two weeks we returned to the ER to get an MRA done, saw a PA at my office, and saw his neurologist. Everyone had the same diagnosis: anxiety.
On Monday, December 1st, Jojo and I went to his first neurologist appointment where we saw images of his brain. The neurologist, Dr. B we shall call him, did a great job of explaining all the normal findings and told us there was nothing to worry about. His gameplan was to start Jojo on anti anxiety medications and order a sleep study. We left that appointment feeling hopeful of the future and that we were on the up.
We were so wrong.
That same night, around 3:30am, Joseph woke me up again stating he was numb. Because we were certain this was a "panic attack", we held hands and did our best to breathe through the numbness and wait for the dreaded headache that always follows. Joseph was getting really frustrated because he couldn't get a handle on the numbness; it would leave then come back with greater intensity in a new body part. At one point his whole body was numb, including his neck and back. He was unable to speak momentarily. This lasted for about an hour and then his alarm for work went off at 4:40am. He seriously did not know how to turn his alarm off, how to unplug it from the charger, and seemed puzzled by the phone itself. At this point I called Valerie.
Jojo kept repeating the phrases "I don't know" and "I can't help you" over and over and over. He kept calling me mom. Honestly, I don't think he had a clue who I was but he was comforted by my presence. He was obviously super anxious, had sweaty palms and chills, and something was not right. Not right at all.
I called Dr. B's office and the answering service sent him a message to call me back. Within minutes he advised me to take Joseph to the ER where he would order a repeat MRI. Joseph was unable to dress himself, could not zip his pants, and the thought of permanent disability was setting in my mind.
We got to the emergency room where we again were greeted with "stroke alert" precautions. They did another CT scan, chest X-ray, and an EEG. Joseph was unable to say his name, my name, his date of birth, or the year. I was absolutely petrified.
During the EEG Dr. B asked me to step outside. He told me that sometimes anxiety does strange things to people. I asked him to consider flea or tick borne diseases as Joseph had been camping in the Big Bend on horseback lately, and his response was, "if you'd like to go against my medical advice you are welcome to take him to Baylor or UT". This upset me to no end as my question in no way was undermining his authority as the physician. The tears started rolling.
At this point in the game I had kept it together. I knew I had to be strong for Joj and in a decent mental state to be able to make quick decisions about his healthcare. Dr. B's unwarranted statement to me sent me over the edge.
And then I couldn't stop crying!
Dr. P, our ER physician, came to comfort me (thankfully!), where I declared my fears of being sent home with another diagnosis of anxiety. He stated that he as well was uncomfortable with that and ordered a lumbar puncture (spinal tap) to rule out infectious diseases. At this point Joseph's fever had spiked to 101.
The lumbar puncture was absolutely terrible. Joseph was so out of it and tried desperately to fight us away (I would too!) I bawled the whole time while holding his neck in place.
Finally, results from his lumbar puncture revealed elevated levels of proteins as well as white blood cells. Neither of which are normal. Doctors immediately began antibiotic treatment and Joseph was pumped full of more antibiotics than I'll probably have in my lifetime. He slept off and on and was generally still confused. We were admitted to ICU where Joseph thought he was in Greenwood, that he was 13 years old, and that his name was Jesus.
I'll be frank and honest, y'all. Our whole experience at MMH was horrific. From nighttime nurses that turned the lights on and didn't know how to work the IV pump (and were consequently training solo?!), to being told three different things by three sets of doctors daily. One day Joj would have viral meningitis. The next day chronic meningitis. To a brain infection. To a blood infection. To a lab mistake. To no meningitis. To acute migraines. To cluster headaches. To a virus???
Sunday night while at the hospital, Joseph had a numbness spell followed by the dreaded headache. The on call physician that came to check on him diagnosed him with anxiety, did not dare look at a newly developing rash, refused to call his infectious disease doctor, and I about flipped my shit. Thankfully level-headed Jarred was there too! We all got about two hours of sleep that night.
When we were discharged Joseph was never told a definitive diagnosis. We were given no follow up plan. I asked Dr. Infectious Disease if we follow up with him: "Follow up with Dr. B". I asked Dr. B if we follow up with him: "follow up with your new headache specialist." "But we don't have a headache specialist. Do you have any recommendations?" "I invite you to look on the internet."
?!?!?!?
We got home on Wednesday, December 10th around 7pm. Because of the bacteria found in Jojos blood he still had three days of antibiotic treatment to finish at home. So a home health nurse stopped by to teach me to start his meds via his IV. He's had two numbness/headache attacks since we've been home. I called Dr. Infectious Disease today to ask what to do as we feel all alone in his care and he advised I take him back to the ER. Ummmm, not. Gonna. Happen.
Tomorrow we are calling some of the research hospitals around Texas to see what it will take to get him seen this week. As of now he has short term disability, but we don't really know when that will end being as how we are out of the hospital. Dr. Infectious Disease is suppose to be helping us get a referral to Scott and White.
As for us, we pray a ton. We dread the night. I've started a new routine of nighttime showers because I've learned through all of this that we never know what the night/early morning will bring. We are frustrated. And tired. And feel hopeless and helpless for now. I know it will get better; it has to. I haven't worked in three weeks. Charley is taking it quite hard and doesn't understand that daddy needs lots of rest. Being super mom isn't really my thing; I'm just an average (at best) mom, so picking up the slack around the house, being the driver and the 100% caretaker is eating me Alive.
We are grateful for friends and family. While we were in the hospital my mom cleaned and organized my whole house. She did about 20 loads of laundry. Val and Joe have watched the girls and stayed up with Liza through the dreaded ear infection nights. Jarred and Bree flew in from California. My sister came down. Friends showered us with food, goodies, gifts, and normal things like play dates.
I don't know if our life will ever be the same. We need Jesus in the realest way possible. We need to be rescued from this and Joseph needs the healing hand of God. We need guidance on medical decisions and we need a bloody brilliant infectious diseases and neurologist.
Pray pray pray, please.
