Last Wednesday evening Cooper started some seizure activity that would not quit. This seizure activity was highly unusual as the majority of his seizures occur morning time and usually involve some muscle spasms of the right leg. On this night, it began as some tingling in his right hand and progressed upwards causing his speech to be slurred, drooling and then some vomit, all lasting a few minutes. After which he snapped out of it and told us he was fine. This, as he called it, fine state lasted a few minutes then he began to slur his speech again, vomit some more and started to get incoherent.
I called the neurologist on call at Children's Hospital to get his assessment on Cooper's situation and whether we should administer Diastat, an emergency seizure medication to be used for seizure lasting more than 5 minutes. But because Cooper wasn't flailing about having the typical what is known as grand mal seizure, we, including the neurologist, weren't sure whether we should give the medication. He felt our best course of action was to take him to the local ER as Children's Hospital was too far of a drive in his current state.
Thinking it would take too long for an ambulance to arrive; we put him in the car and drove 15 minutes to Civista Hospital in La Plata. An ER Crew of about 6 met us in the parking lot and whisked us into the ER and began administering a series of anti-seizure meds, basically sedating Cooper and shutting down all electrical activity within the brain.
Once they stabilized him they informed us they would transfer him to Children's via helicopter. Then they came back and said due to the storms in the area, the helicopter could not fly and Children's was sending a ground crew to get Cooper. The ambulance (ground crew) arrived after about an hour and began prepping him for transport. Due to the length of the ride and the fact that seizure sufferers can possibly have their airway restricted, they decided to intabate him; whereby they put a tube down his throat and let a ventilator do his breathing.
The ground crew said one of us could ride in the ambulance with Cooper and that they would be leaving in "two minutes". Sheri would ride in the ambulance, I would go home get us some clothes and coffee (it was approximately one am at this point). I left for home, got clothes, food and coffee and started heading for the hospital thinking I needed to get there to help Sheri as they should already be at the hospital or close to it.
About 25 minutes into my drive and still 20 minutes from the hospital, Sheri calls me on my cell and says they are STILL at Civista and they now decided they would use the helicopter to transport him but Sheri would still have to ride in the ambulance as there is not enough room on the helicopter. If they had left when they said they were going to they would have already been there, I was really confused. As it turns out the ambulance crew needed way more than two minutes to prep Cooper for transport and by the time they got him ready the helicopter was available.
About 230, as I'm getting ready to make a left onto Michigan Ave with the hospital in sight, I hear the distinct whirring of a helicopter. I make the turn onto Michigan and pull into the hospital parking lot while I'm watching the helicopter land. I went up to the ER and said I think my son was just brought in by helicopter. They said he was and took me right back to where about 12 people were just beginning to work on Cooper. They immediately assured me he was in no danger and they were prepping him for ICU.
Sheri arrived a half hour or so later just as they were taking Cooper up to radiology for a CT scan. Nothing against Civista in fact all of their ER people were top notch. Dr Brown from Civista even called us Friday to check on Cooper. They just don't have the means to treat children neurologically. There is something definitely reassuring about being back at Children's. I don't know if it's because we spent so much time there or the fact that these folks work with kids all the time and they know what to say to us parents but we feel better when we're there.
They did the CT which came back negative and moved us into the ICU where at Children's it's called the PICU (Pediatric Intensive Care Unit as opposed to the NICU, for all the preemies and newborns). At around 4:30 am Thursday morning, Sheri and I were able to sit down.
At this point Thursday isn't much more than a blur but I think I can piece it together.
0530 Spinal Tap (now called lumbar puncture or LP I guess they are trying not to scare people with the old term) results: negative
0630 Sheri's mom arrives
0830 EEG tech hooks up for a 30 minute EEG, Results: Cooper is not having seizures
1030 Cooper starts to awake and choke on the breathing tube
1045 Respitory people arrive and remove tube, Cooper is back to sleep
1100 Uncle Will and Aunt Janet arrive bearing much needed food
1300 My folks arrive, Cooper is still asleep due to the heavy sedation
1400 Cooper starts to wake up but is in and out of sleep.
1600 Sheri and her mom go home to get some sleep and to see Ethan and Isabel and relieve Lucianna
1900 Dad leaves to go stay at Aunt Janets
Cooper I believe is awake some and watches some tv ( I really don't remember much that evening. I was starting to drift in and out myself). I remember NOT getting to the cafeteria before it closed and had to eat chicken strips from a vending machine. I think Cooper was awake because I do remember trying to get him to eat some of my chicken.
2230 Sheri comes back to stay the night, my mom stays as well to help Sheri
2300 I leave for home
Friday morning I return and Cooper is awake and very combative about being bed ridden. He keeps telling us he is better and wants to go home. He has an MRI scheduled at 2 pm. They sedate him for the MRI and results come back negative. Cooper didn't awake from his MRI until almost 5pm. At this point they are ready to move him out of the PICU up to the neurology ward on the 4th floor. However, they want to run a 24 hour EEG on him. So before he even wakes up they attach 20 some electrodes to his head and enough wire to power a small city keeping his movements limited.
We get transferred up to the fourth floor about 1830. Once Cooper was settled, Sheri, my mom and my dad leave to go home and see the kids. I will stay with him Friday night. He ate a lot of junk and we watched a lot of junk on tv and he was out by 2200 and me by 2300. We also had a surprise visit, which really brightened Cooper's spirits, by Mrs Zito and Mrs Caroseli from Cooper's school. We had a good night as far as hospital nights go. The alarms, the intrusions by roommates and nurses checking vital were all minimal and Cooper had a good night sleep. Me I slept some, but hospital sleep for me tends to come in blocks, no more than three hours at a time.
It's now Saturday and Sheri, Ethan and my folks get back to the hospital around 1130. Cooper is still hooked to the EEG machine but the Doctors let us know that when that is finished he will be discharged. They came and removed the EEG leads around 1300 and when I was comfortable that he would be discharged, I and Ethan head for home. Cooper was discharged and got home around 1600 Saturday afternoon.
As it turns out, thankfully, all the tests came back negative. No tumor re-growth or signs of hydrocephalous (fluid pressure on the brain). The doctors believe that Cooper's anti-seizure medicine is not at the right level. We have now increased the dosage and basically live on egg shells wondering what may come next.
At this juncture, I start to second guess myself wondering that maybe we should have just let Cooper sleep it off at home Wednesday night. One of the after effects of a seizure is extreme tiredness. We have seen it before from him after a nighttime seizure. He was tired Wednesday evening as it was past his bed time and couple that with a seizure, it's no wonder he became incoherent. I think his body and his brain basically said "I'm tired and I just had a seizure, I'll see you tomorrow."
If these seizures are the worst that has come out of the whole brain tumor ordeal, we consider ourselves pretty lucky.
Sorry to anyone who was aware of Cooper being in the hospital but wasn't aware of the results.