On October 27th, 2011, Owen had gone two weeks without using his feeding tube! We were starting to discuss how long to leave it in with his doctors and therapist. He was still extremely picky about what he ate, but he had at least one or two items in each food group that he would eat consistently. He was maintaining his weight and drinking enough to keep hydrated. He wasn't taking any medications at all. We had discontinued his phenobarbital at 6 months old and he'd been off his reflux medications for a few months. His development was right on track for his age other than the few lingering food issues. We thought we were in the clear. Everything was going to be fine, our special needs child wasn't going to be special needs any longer. We decided to keep his tube in through flu season to make sure he could get through an illness all right and then in the spring we would pull the tube and be done. We were convinced that you would never even know that he'd had such a rough start and been through so much.
That morning Owen woke up with a stuffy nose and a slight ( 99.4 F) fever. At first, I panicked. I didn't want him to get sick when we were just getting his eating under control. Then I decided it would be a good test of whether he would be able to maintain hydration. That was our main reason for keeping the tube in after all. We wanted to see if he would still eat and drink when he wasn't feeling well.
I helped Owen with his breakfast and got him some juice, then I set Cameron to watch him and got in the shower. The minute I got out of the shower, the older kids were telling me that Owen had gotten hot, really hot. I threw on some clothes and rushed out with the thermometer. In less than an hour Owen had gone from barely having a fever to running 103.8F. I gave him a dose of Tylenol and starting sponging him down with a cool cloth. Two hours later the fever had come down to 101 and Owen fell asleep. I figured sleep was the best thing and put him to bed expecting that he would wake up just in time for another dose of Tylenol.
I started the older kids making sandwiches and ate one myself. Then I went back in to check on Owen. It had been about 15 -20 minutes since I put him down. When I went in the bedroom Owen was seizing! His left hand and the left side of his face were twitching. I hollered for the other kids to get me the phone and suddenly the twitching stopped. Knowing what we know now, we are pretty sure he was just in a brief tonic phase and that the seizure wasn't actually over. Since the twitching had stopped (he was still clenched), I called the doctor's office. Just as the nurse picked up, Owen started twitching again and I told the nurse he was having a seizure. She told me to hang up and call 911 immediately. I called 911 on my cell phone and handed land line to Connor to call Daddy. Devon had the kids cell and I gave her a list of relatives to call until she could find someone to stay with them( Devon was 14, but I didn't want her to be left with all the kids for very long). Cameron locked up the dogs and cleared the shoes out of the entryway. Connor couldn't get through to Rod (it turned out that he was out of cell range that day) and headed down the driveway to guide the ambulance.
Within about 7 minutes, the guys from our local fire department started showing up. The local ambulance arrived a few minutes later. Our county has this program where the Bellingham fire department handles all paramedic services and is the only ambulance who transfers to the hospital. The decision was made to have our local ambulance transport us to the Medic One ambulance rather than wait for Medic One to get to our house. I grabbed my phone, my wallet and Owen's diaper bag (which somehow managed to get left on the sidewalk next to the driveway) and we loaded into our first ambulance of the day. We only drove about a mile before meeting up with Medic One and switching to our second ambulance of the day. The medics immediately started Oxygen and began trying to get an IV in Owen so they could give him medication to stop the seizure which was just getting stronger and stronger. We were only about 5 minutes from the hospital (we're about 20 minutes away at ambulance speeds) when they finally got a line in him (Owen unfortunately inherited my cruddy veins) and gave him the first dose of Ativan which unfortunately did nothing.
Owen had been wearing a sweatshirt I had made for Devon before Connor was born that had been worn by all of my children up to that point. They had to cut it off him. I quickly pulled off the handknit longies he was wearing so they wouldn't cut those off too. It's so weird when I remember this incident what things stand out in my mind and what I have completely forgotten. I can still see that sweatshirt in pieces on the floor of the ambulance, but I can't remember if they gave him a second dose of medication or if he got that once we were already at the hospital.
The next couple of hours are a bit of a blur. I remember incidents, but I'm not entirely sure of the exact timeline. Owen ended up getting 11 doses of at least 5 different medications. I only recognized Ativan, Valium ,and Phenobarbital. After a couple doses of medication had been administered, they informed me that we would be transporting down south. Children's was full, however, so they were trying to find a hospital that had room probably Harborview or Mary Bridge. I remember the nurses discussing the different hospitals and throwing half of them out as not being able to meet Owen's needs. One nurse's exact words were "Oh no, He's too sick for there!" They decided to do a chest X-ray to check for aspiration from his feeding issues and to look for a possible cause for the high fever. I had to leave the room then since I was nearly 12 weeks pregnant with Brenna. That's when I finally got hold of Rod who was still over 30 minutes away. They wanted to do a spinal tap on Owen to check for meningitis, but couldn't because he was still seizing. His pulse ox dropped to 70 and he had to be intubated which required 3 more doses of medication. I remember the ER doctor coming into the room, pulling at his hair and yelling at the nurse about why transport wasn't ready yet. The nurse replied that transport was ready and waiting , but we didn't have anywhere to send him. At one point we were all (I don't think there were ever less than 8-12 people in his room) just standing around and watching him seize while waiting for the pharmacist to hand carry 3 vials of medication to his room. I don't have a clue what was in the vials, but the pharmacist mixed them in the room with us and injected them into Owen's IV and FINALLY the seizure stopped. 2 hours and 40minutes was the final tally not including however long he had been seizing before I went in to check on him.
Bridget happened to be in Seattle and we were able to get special permission to let her visit Owen even though visiting hours were officially over. I ended up staying in Owen's room that night while Rod slept upstairs in one of the special parent rooms the hospital has. Early in the morning they were able to extubate Owen and start feeding him. Owen was like a newborn baby. He couldn't hold up his head. He couldn't sit up, he couldn't use his hands properly. He hit himself in the head trying to bring a toy close enough to play with it. So, we ended up giving him formula through his feeding tube. Two weeks with no feeding tube at all and here we were on a continuous drip feed. Owen had never had formula before. I had given him breastmilk through his tube and then transitioned to blended diet as he got older and would have started solids.
We were transferred to an isolation room on the medical floor later that day. Everyone had to gown and glove before coming into the room because we still didn't know what horrible disease Owen had that caused the fever. Owen refused to sleep in his crib, so we took turns sleeping on the parent bed with him. Children's has a rule that the child can't sleep in the bed with a parent unless one person is awake in the room, so they come in constantly to check on you and wake everyone up (this will be important later). The neurologist on duty started Owen on Keppra to prevent more seizures and they continued to test for various illnesses with no success. Owen ended up having horrible stomach pains and diarrhea from the formula, so I finally convinced the doctor to give us baby food to put through his tube instead. Owen was still groggy and had an extreme lack of coordination. At first they assured me it was due to the medications. After a couple of days they started suspecting it was from the seizure and told us he might not get back to normal.
Rhinovirus, AKA the common cold. All the other tests had come back negative. All that was from just a cold. Meanwhile we are in the hospital doing absolutely nothing. Rod and I started pressing the doctors about when we could go home since they don't have any treatments for the common cold. We needed to know whether to send Rod home so he could work and take care of the other kids or if we'd all be going home. We only had Rod's work truck with us so if Rod left, I had no way to get Owen home without someone making a 5 hour round trip drive to pick us up. The doctors kept putting us off. Owen wasn't back to normal, so they weren't sure if they should send us home. The Attending finally said that we could probably go home tomorrow, so we decided to have Rod stay after all.
The next day we had a follow up at our normal Dr.'s office. She was torn between the effects being from the drug or the seizure and decided we'd just have to wait a week or two longer. After 2 weeks Owen was back to about 95% of normal. After 1 month he was eating 100% orally again. After 6 weeks we switched medications due to the horrible side effects from the Keppra. Over the next year we tried 5 different medications and /or combos of medications and kept having seizures every 2-8 weeks. That pretty much brings us up to PART THREE.