It’s been a long, scary, emotional, and exhausting week at Cooper Hospital. We must have somehow missed our stop to “Recovery Town.” The train line came to “Infection-Ville”, which was the last stop, and we were forced off into the depot. Now we are stuck here, waiting for a one-way-ticket back out. This was the LAST place we ever wanted to visit twice in our recovery. Yet, here we are.
We did our research before embarking on this road. We got a first opinion, and then went elsewhere for a second one. (Thank God we did that, because the first doctor would have steered us in a very bad direction). We were advised that Cooper was the best place to go, so I researched the best doctor, asked around, and got us on a waiting list. We built a team made up of the top doctors in infectious disease, plastics and neurosurgery. We were beyond thorough; we had a detailed plan of action that covered all our bases, and followed it precisely. No one dropped the ball.
Despite all of that, I awoke on Friday morning from a motel up the street to 57 texts from Patrick, in a total state of panic.
(6:00 a.m)“Where are you?!?! I need you! I don’t understand what’s going on.”
(6:10)“The doctor says for you to call him ASAP. There is infection.”
(6:15) “He said I’m staying in the hospital. They may operate again to take the thing out. That doesn’t make me feel great.”
(6:25)”You aren’t here to help me field these doctors. I am lost.”
(6:30) “Where is my guardian??? So many fucking doctors came by. Different ones I’ve never met. I am freaking out.”
I had slept through both of my alarms, his phone calls and texts. My heart immediately began racing and I was instantly sweating. I was beyond exhausted and had no idea if what Patrick was writing was accurate, his imagination running away with with him, or some mix of the two.
Patrick’s neurosurgeon had placed Patrick in the ICU after surgery, not for trauma purposes, but for close, detailed observation. He was only willing to give him minimal pain killers, because they interfere with nuerolocal testing, and he wanted to be able to quickly pick up on any signs of a mid-line shift or swelling in the brain. He was still in the PACU, and had been in a high traffic area for over 24 hours. All of this was best for him, and signs of great care, but he was NOT loving life, to say the least.
Next came a very sobering phone call. My heart sank into my feet as the doctor said to me, “Listen. We have a serious problem.”
When Patrick’s brain was exposed in surgery, the Infectious Disease doctor had ordered a culture swab to be done of the dura (skin) to check for infection, due to his previous history. However, when the culture had been stained in the lab, it revealed not, one but TWO types of bacteria; gram positive and gram negative. That bacteria was now sitting in the skin, on top of the plate in his head. It was not good; not good at all.
“We are going to incubate the gram stain,” he said, “to see what grows. We are starting him on two broad-spectrum, powerful IV antibiotics to cover our bases, and once we know what is growing we can hit it with more specific antibiotics, if we prefer to go that route.”
I was startled. “Wait,” I said. “IF? If we prefer? What other choice is there?”
“I must tell you,” he said….”we rarely get away with antibiotics. As you are well aware, it is nearly impossible to remove bacteria from a foreign body (i.e. a synthetic plate ) once it is colonized with bacteria. You’ve been here before. There is probably only a 5% chance that his plate will stay in.”
I thought I heard a crack rip through the planet, or the tiny siren of an atom bomb in the instant before it explodes. This was not real. There was no way in hell this was happening to us again.
I remained calm on the phone, discussing the plan of action with our Neurosurgeon, and asking all the questions that were racing through my mind. He made me feel as if he was going through this nightmare not as a a removed spectator, but WITH us. He has the best bedside manner of any surgeon I have ever met. He told me Patrick would stay in the hospital until this was resolved, and that they would incubate the culture once a day for 3 days, and wait and see.
Wait and see.
Two more words you don’t want to hear in a hospital.
I hung up the phone. The PACU suddenly seemed like a jungle. The noises, the smells, the lights… everything felt sharp and piercing and invasive. I stumbled out the double doors and down into the waiting area. I told my parents what the doctor had said. I was trying to stay calm, but I felt it inside me, pushing to the surface; I had to get away and cry.
I went into the bathroom, ran the water, and put a timer on my phone for 5 minutes. Five minutes was all I was going to allow myself to cry. Anymore and I wouldn’t come out of it. Any less and I wouldn’t be able to keep it together. So I sobbed for 5 minutes, and when the alarm went off, I went to the sink, splashed cold water on my face, and willed myself to stop. I caught a glimpse of my face in the mirror. I looked haggard; my face puffy, eyes red, and skin pale. I patted my face dry, took 5 deep breaths to slow my heart, and walked out.
“Wait and see” were our instructions, and wait we did.. all weekend. Patrick tried very hard to stay positive, but by Monday he had grown weary of the hospital, and so had I.
Finally, yesterday, we received some good, yet confusing news. Surprisingly, nothing had grown on the cultures, which had left the doctors sort of in the dark about how to proceed. Taking the plate out was still an option, but as he would have to receive IV antibiotics anyway for two months before another Cranioplasty could be attempted, they decided instead to administer antibiotics first, and see if we could kill whatever was growing before the plate became colonized.
I finally got to talk to I.D. and Neuro face-to-face. I felt absolutely no feeling of annoyance on their on towards my onslaught of questions, which was refreshing. On the contrary, they seemed pleased that I was educated and interested in learning even more. We formed another plan; he would receive empiric, IV antibiotics for 4 weeks through a pic-line, and then oral antibiotics for a year. If at any time an infection develops, we will have to remove the plate and (unbelievably), start over again. The docs feel confident that we now have a slightly better than 50% chance that he can keep the plate in.
“Slightly better than 50% chance”– those are still not the words you want to hear in the hospital.. but they are better than “wait and see”, and certainly better than “5% chance.”
We have pursued in-patient, acute therapy for Patrick, so he can begin to make up for what he has lost due to a week in the hospital, as well as the subversive effects of anesthesia, which for TBI patients causes regression. His hemiplegia is worse, he is not walking as steady, and there are cognitive issues resurfacing as well. However, acute therapy is typically approved only when a person is unable to walk 50 feet. Patrick in PT yesterday walked 80 feet, and we’ve been told insurance may not approve him. I can’t begin in this already lengthy blog to speak about the insanity of insurance policies, or what it feels like to have a stranger behind a desk determine your loved ones fate. Let’s just say, I plan to appeal the denial with a peer-to-peer phone call, if need be.
I want to thank all of you for your love, support, light, prayers and well-wishes this past week. It helps. Truly. Before TBI came into my life, I didn’t even know it existed. Now that it basically IS my life, I want to educate others about the realities of what TBI survivors and caregivers face. This isn’t like any other injury out there. It is a chronic condition, with issues that persist and arise for a lifetime. And it is happening to 1.7 million people a year. We are in the fight of a lifetime, meaning… we will fight TBI our whole lives.
So now we move forward. IV antibiotics twice a day for a month. They’ll teach me how to administer them. We will check for infection for the next year of our lives. And we’ll keep plugging ahead, at least for now, with Patrick’s head whole again. Thank God.