When the unexpected happens…Part One

My intention after the last blog post was to share pictures of our constructed cabin that we’ve managed to almost finish at our off-grid property. However, this past fall, winter and spring, have done anything but go according to plan. So, this blog post serves several purposes. It’s a PSA of sorts for anyone who reads it, and an exercise in therapy for me.

November 3, 2014, our lives changed drastically. My husband was not acting himself – unable to talk, losing the use of his right side and in general acting very confused. This after having been sick vomiting 2 nights before. Once I realized that he wasn’t just ignoring me because he felt too rotten, I took him to the emergency room, fearing that he may have suffered a stroke. Once we arrived, we found out it was actually much worse.

He had been fighting a sinus infection off an on for the past several months. He had experienced terrible migraines as well. It just seemed like he was sickly or sick and just couldn’t shake it. He just hadn’t felt like himself for a long time. In August of 2014, one of his teeth died and had to be pulled. The dentist said he couldn’t tell him why it died, but he could do a root canal or just pull it. He elected to have it pulled. It had just been one thing after another, something constantly wearing him down.

The real problem was that the sinus infection he had been suffering from had actually eaten through his skull, through the membrane that covers the brain and was now actually on his brain. There are so many details I could bog down this post with, but I will try to stay at a level that keeps interest. I must tell you though, that I could not comprehend the extreme severity of the problem. I was still thinking stroke. But, the fact that once we were called into the triage area and medical personnel suddenly started moving very quickly, I should have known something was up.

An initial CT scan revealed the issue, followed by an MRI. IV antibiotics were started in the ER exam room while we waited for a bed in ICU to be readied. The ER doctor explained to me that a neurosurgeon would be meeting with me once we got to ICU after he had examined the MRI results. I was in a complete state of shock. Completely unable to process all the information being thrown at me. Still not realizing the absolute severity of the situation.

Once he was settled in ICU, his nurse asked if I had any questions. I asked the obvious – how long were the antibiotics going to take to finish so we could go home. I must have sounded like I was completely out of my mind. She was an absolute doll, and in a way that wasn’t condescending, explained in detail exactly what was going on. The infection was sitting like a ball, lodged in between the brain and the skull. It was so big in fact that it had caused his brain to shift within his skull to the right. There were 2 big concerns. 1) If the infection was just sitting on the surface of the brain, the neurosurgeon would be able to hopefully clean it out and remove it. If however, the membrane that covers the brain had begun to grow over it, then it would be more like a brain tumor and could possibly be inoperable. 2) How much irreversible damage might have been done to the brain.

After meeting with the neurosurgeon and an ENT, surgery was scheduled for that Friday to allow a few days of antibiotics and try to get him more stable before proceeding with such a traumatic procedure. The doctor explained that they would do a culture of the infection so the proper “cocktail” could be administered. He also explained that this infection had been in his sinuses for YEARS – that it takes a very long time for bacteria to eat through bone. They would perform the surgery together to remove his sinuses along with attacking the infection on the brain.

My husband was mostly sedated for the next couple of days. Everything was geared toward getting him stable enough for surgery. By Wednesday evening, he was having seizures. Thursday morning, the decision was made to intubate because he had lost the ability to swallow. He was breathing fine on his own, but they were concerned that he would aspirate and quite literally, drown on his own saliva. After he was intubated, another CT scan was performed and the decision was made to take him to emergency surgery because the infection had invaded another part of his brain.

3 hours later, he returned to the room. I was told that he would remain in a medically induced coma for the next several days. The brain is a muscle. So, much like when you sprain an ankle, it needs rest to get better. The coma was necessary to avoid stimulation of any kind and let the brain begin to heal.

There was an endless parade of doctors, speech therapists, physical therapists, directors, supervisors, counselors, nurses, respiratory therapists and social workers day after day. Everyone kept telling me we would have to “wait and see” and “hope for the best” and “make sure you are taking care of yourself” and talking about “preparing myself for the possible limitations he might have”.  Not one of them actually came out and said “he may still die”, but in essence, that’s what they were trying to tell me.

Please – look at the recap so you can appreciate the severity of this with me. It took me a couple of weeks to wrap my head around this. He was admitted into the hospital on Monday, and with each passing day, even while receiving antibiotics that were so strong had to be approved by the CDC and the hospital administrator, he was progressively getting worse. THAT’S the kind of infection we were dealing with. He had lost the ability to talk or to swallow. The use of his right side was gone, and the right side of his face had begun to droop. When I met with the neurologist after the surgery had been performed, she told me it was a good thing I had gotten him there when I did – he was down to hours of being alive. Hours.

A culture of the infection showed that it was streptococcus constellatus. It was explained that this is one of the more “puss-ey” forms of strep, so its able to spread quickly through the body, infecting everything in his path. Much like battery acid or mold. Just grows and grows as long as it has something to feed off of.

14 total days were spent in ICU. 3 days were spent in PCU (a downgrade from ICU), and 4 days were spent in a regular room. During this time, speech and physical therapy were being performed, along with the endless parade of various caregivers. Then he was released to a rehabilitation facility for 2 weeks  for speech, physical and occupational therapy, and finally came home on December 6, 2014. There was an additional 6 weeks of in home speech, physical and occupational therapy. I was trained how to administer his antibiotics through his PICC line twice a day for those 6 weeks as well. Once a week, a nurse came to draw blood and change the PICC line dressing.

Here’s the PSA part. Follow your instincts. If your instincts tell you something isn’t right, it usually isn’t. Push for a second opinion from your doctor. Push for more tests. If after 4 rounds of antibiotics, you still have an infection, there’s something else going on. Don’t accept things as “just getting older”. My husband has always had sinus trouble with allergies and sinus headaches, so at first, the recurring infections didn’t seem out of the ordinary. His father had migraines most of his life, so when my husband began having them, he thought “well, I’m 50 now, Must be my turn.” Not being able to get well, we just chalked up to being older and not able to shake things as easily. We’ve been through so many shoulda, woulda, couldas.

Not only did he live, but those “limitations” they were concerned about aren’t quite as severe. His doctors and caregivers considered him a miracle and the luckiest man ALIVE. Once he was brought out of the coma, the nurses that had been assigned to him while he was asleep would drop by. “I just had to see him!” they would say. I could never express the gratitude and love I feel for everyone at the hospital. He had an AMAZING team taking care of him. And they went out of their way to take care of me as well.

I’m proud to say that on December 6th, he WALKED out of the rehab facility. Rather slowly, with the use of a cane, and with a nurse by his side ready to grab his balance belt if he stumbled, but he WALKED.





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