Monday, May 7, 2012

The reality is…

In February we experienced a very scary roller coaster ride when Jackson had a prolonged seizure.  The week we spent in the hospital was like one of those fuzzy nightmares you can’t seem to wake yourself up from.  So many doctors and nurses visiting, asking so many questions, going over every inch of Jackson’s medical history.  Jackson just turned 3 and his medical chart is 10 times the size of mine.  It has almost been two months since the seizure so Sara and I had been contemplating moving him back to his big boy bed.  I find it so hard not to be afraid of doing this. What if he has another seizure like this last one where he didn't make a noise didn't move?  Is this the way the rest of our life is going to be? How do you get a piece of mind after something like this?  We were scheduled to have a follow up visit with the epilepsy neurologist on Wednesday, April 25th.  The doctor had told us we can’t put Jackson in the bubble and watch him sleep every night for the rest of his life in fears of him having another seizure.  I think I looked confused when he said those words, my thoughts were…does this guy have any children?  How the heck can a parent sleep under these circumstances, I mean really…  Does this man even have any clue what it took for us to have Jackson?  Sure they put him on anti-seizure medicine, but warned us that it might take a while to find the correct dosage, or even the right medicine. Awesome! What great odds.  We asked a lot of questions, but these thoughts have continued to resonate in my brain as we got closer to our follow up.  Even with Jackson sleeping in our bed though there are no clear warning signs of when a seizure is going to strike.   I find myself bolting straight up in bed in the middle of the night sometimes, grabbing my cell phone for light to see if he is breathing normal and make sure his eyes are closed not gazing into never never land.

A little over two weeks ago Jackson got a really bad cold.  Runny nose, bad cough, even a fever.  The fever was low grade, but that didn’t curb any fear as fevers can trigger a seizure.  We kept Jackson from school and monitored him very closely.  He was very cuddly for a few days and his hyper activity came in very small doses.  After day two of fever Sara took him to the pediatrician.  We had been giving him Ibuprofen and it was bringing the fever down, but the pediatrician suggested us not to give him any more since the fever hasn’t been high and that a fever is not always a bad thing, it is his body fighting off a potential infection.  His lungs sounded good, no ear infections, and drainage didn’t indicate infection either. The next day his fever was gone, but the runny nose and cough were there for a few more days.  Sara kept him from school because he still hadn’t bounced back to his normal self; this also gave him the weekend to recover.  Come Monday we sent Jackson to school.  Jackson still had a runny nose and a terrible cough, but he seemed to be feeling much better.  School said he seemed fine all day; he even took a 2 hour nap.  Both Sara and I found that odd, a 2 hour nap is very rare.  Jackson’s appetite was back to normal as he was at the pantry all night asking for cookies and crackers.   It seemed like Jackson was very frustrated all night though.  We would give him choices and usually you only have to give him two and he happily chooses one, he seemed upset over the choices we gave him.  He seemed to be banging his head a lot.  We sat down to a nice dinner; Jackson even ate the creamy spinach.  So we thought perhaps his behaviors were because he was super hungry.

Jackson took his last dose of medicine before bed that night and went to sleep without any issues. Then a little after 10:00 PM Jackson started throwing up in bed.  He took the brunt of it, the sheets and my pillow took the rest.  Sara scooped him up, took him into the bathroom.  He was real fussy, so she kept him nearby the toilet as we disrobed him for the shower.  Sara noticed he was shivering while she rinsed him off, a little shaky.  As she cleaned him, I took care of the bed.  Sara wrapped Jackson up in a towel and brought him to the living room to get him dried off and put lotion on him.   That was when round 2 of puking began.  I dashed in with a bowel, but was too late for the majority of it when I saw Jackson go into his seizure.  Sara was holding him at the time when his body went limp and he became non-responsive.  We looked at the clock to get the start time and started calling to him, trying to see if we could get him to come out of it.  Just after 5 minutes we administered his emergency medicine which is given rectally, but he had a bowel movement shortly after.  Sara stayed with him, I called 911.  We live really close to our local fire and rescue station so as I was on the phone you could hear the sirens blare.  Sara in her sleepwear is asking me to grab her clothes. I was trying to remain calm as the 911 responder asked me questions, but I didn’t grab the proper attire for Sara to wear.  I think it was like a halter top thing-a-ma-whatever and some yoga short pants.  So a few trips back and forth, I think I got her something she could actually wear. We had fire, rescue, and EMS show up this time around, 6 men standing in our living room asking us the million questions.  The first question being the most important, where do you want to go?  Answer (without hesitation in unison with high voices): CHILDRENS!  They hooked him up to a few devices before taking him out the ambulance.  Jackson blinked a few times, but was right back to the fixed stare.  Sara and Jackson left on the ambulance as I ran around the house like a chicken with my head cut off getting the dogs gathered and grabbing wallets and diaper bag with toss what I thought was important at the time.

When I got to the hospital I made sure to pick the widest parking spot. After passing my security test the guy at the front desk took me back to where Jackson and Sara were.  He was still not responding, he was on oxygen, and the rest of his vitals were in a good state.  There were a few nurses and two doctors, they were not confused and fumbling around like we saw at St. Anthony’s.  A nurse popped in to ask the doctor a questions and the nurse happened to be one of Sara’s 2nd or 3rd cousins. They administered a dose of medicine to bring him out of the seizure, but after 5 minutes he was still in it.  So the administered a second dose of the same thing, after 5 minutes he still wasn’t out of it.  The third dose was something different and he started blinking and went to sleep.  I can’t think of the names of these medicines as I write this.  Looking at the time it was just after midnight so Jackson’s seizure activity lasted for at least 2 hours.  The ER doctor told us she wanted to monitor him over the next hour or so and to expect that we would be staying the night.  Depending on how Jackson does during this time would determine if we would be going to PICU or neurology floor.  Sara’s cousin popped in and out checking in on us even though she wasn’t our dedicated nurse.  Jackson slept the entire time we were in there.  They did two nose swabs to check for flu virus, both came back negative.  Around 4:00 AM they moved us to the neurology floor.

We were put in a room that already had someone in it like the last time we where here.  The doctor came in to go over the events of the evening and Jackson’s medical history.  The doctor wanted to keep us overnight, hmm…it was just after 4:00 AM so not much more of overnight left.   We got all settled in and I got a good hour of sleep in before calling work to let them know I wasn't going to be in.  A little later in the morning Sara ordered some breakfast, Jackson was in and out of sleep. Jackson didn't eat much, but he was real thirsty.  The doctor came in to see how Jackson was doing later in the day.  He wanted to see if he could walk, but Jackson was not ready, couldn't really stand on his own.  The doctor thought if he would walk then he would send us home.  Sara and I told him we did not want to leave until we knew he was going to be OK because the last time we were in the hospital we were discharged and back in the same day.  Sara’s mom came up to visit which allowed us to run home, shower and change, let the dogs out, and grab a spare set of clothes.  While were home Sara’s mom called, Jackson threw up all over her, so we grabbed spare clothes for her.  When we got back to the hospital Jackson was sleeping again.  The nurses and doctor both explained he would probably sleep a lot because of the medicine he received to bring him out of seizure.

In the evening my mom, dad, and sister-in-law came up to visit. Jackson was really excited to see them.  Tricia brought a box of cheez-it’s and Jackson was ready to eat. He was all smiles while they were there. He cuddled with memaw for a bit.  Tricia played a game of get-cha with him; it is where she kisses all over his neck and he belly roll laughes.  He also jumped into poppy’s arms for some back tickles. Jackson received his nighttime medicine and my family left so he could get more rest.  It proved to be a long night though with all the sleeping he had done.  He was agitated to have the pulsox on his toe and he was ready to be out of bed.  We wrestled a lot with him, he seemed really uncomfortable.  They gave him a does a Tylenol and that seemed to work.  In the morning Jackson ate a lot at breakfast.  He was definitely feeling better. The doctor came in early to check in on him and see if he could walk on his own. He was super wobbly and not steady at all on his own.  The doctor said maybe after he has some more food he would be better.  Jackson still could not leave the room though because one of tests they do to check for various infections takes a few days, so he was still on quarantine.  Our nurse brought us a wagon, so we pushed him around in our room. That helped him a lot.  By the midafternoon he was more steady on this feet and they released him.  He was so happy to be carting around in the wagon and then riding in the car.

Sara’s mom said we could bring him over to her house so we could get some rest.  When we got to her house he curled up on the couch and took a nap.  We left him and ran home to get nap ourselves.  When we picked him up he was hyper and ready to play.  He was getting around much better, but was still a bit clumsy.  By the next day he was 100% himself, running down the halls and full of energy. We were glad to see this seizure didn’t take him down as bad as the last time, but it was also a reality check that the anti-seizure medicine isn’t a cure all.  It could take us awhile to find the right dosage or even the right medication, in the meantime I hope that my little man doesn’t continue to have to have these prolonged seizures till we get it exactly right.

1 comment:

  1. I'm sorry to hear that. I will pray for Jackson and you and Sara.