Then the morning of Sept 28th rolled around. Bryan was sleeping downstairs to take care of Eli's stuff through the night and I was upstairs sleeping in our big bed with Zachary. Yes, Zachary sleeps with one of us these days. He needs the extra comfort from us having to be apart so much. If you have an opinion on that then we ask you kindly keep it to yourself because it works for us right now.
Anyway, about 6:30am Bryan rushed into the bedroom carrying Eli. Eli looked very limp in Bryan's arms. Bryan's voice was shaking and he said something was wrong with Eli. We took him back downstairs so we could look at him in the light. Eli's head and body were soaked in sweat but his body was cold. His eyes were open and in our direction, but he was not looking at us. They were fluttering and the movements were getting jerkier. His arms were starting to jump around too. We looked at him and each other and knew we were calling an ambulance. Bryan took him to the living room to lay him on the floor with nothing around him. I grabbed the phone to call 9-1-1. I honestly stared at the keypad for a moment trying to remember what number to call. It was surreal. I talked to the operator and told him our two year old was having a seizure, that he'd never had one before, and that he has an extensive heart history. As I reread that last sentence it sounds like I was in complete control of the situation and very calm. Frankly I'm surprised I even had control of my bladder at the time. He had us make sure Eli was breathing (he was, thank God!) and confirmed our address and situation. He also wanted us to have a list of Eli's meds available to the paramedics. I told him we have a folder with a pretty accurate history & meds. He assured us help was on the way. He asked if I wanted to stay on the line but I said no but I'd call back if anything changed before they arrived. During all this, Eli's movements were continuing. His arms were jerking around and his legs were a little bit too. His eyes were jumping around as well.
While Bryan stayed with Eli, I ran upstairs to get my shoes. I also called my mom. You know that feeling you get when the phone rings at a really late or really early hour? Well I did that to my mom today. We didn't talk much "Can you come stay with Zachary? Eli's having a seizure and the ambulance is on its way." She said, "I'll be right there." And she was. The firetruck pulled up in front of the house, followed by mom who was followed by the ambulance. As they were all pulling up, Eli's jerking, jumpy movements stopped. The seizure lasted about ten minutes. He was still unresponsive but he wasn't seizing. When the EMTs got inside they asked a few questions but really didn't spend much time at the house. Eli & I rode in the ambulance to the hospital and Bryan followed in the van. At our local hospital Eli was assessed and a brief plan for testing was begun. In thirty minutes' time he had started the seizure, help arrived, transport complete, assessed by an ER nurse and doctor, vital signs taken, he was in & out cathed for a urine sample, and they were preparing to draw blood from his PICC line. Bryan and I were very impressed. We've often wondered how we'd feel about emergent care at our very small local hospital if the situation arises and today helped ease those fears. Throughout all this he was still very drowsy which is very normal after a seizure. He would occasionally whine a little during certain things (urinary catheter and rectal temp). We were getting some small responses from him, but nothing noteworthy. His vital signs were fine other than his temperature was low at 95.9.
At 7:30am he got that dazed look in his eyes. The nurse was just leaving the room to get something and we called her back. She took one look at him and called for the doc who appeared within seconds. The same thing happened as far as his eyes and his arm movements, but this time was much shorter. It was almost exactly two minutes (yes, I was watching the clock). Post seizure vital signs were good. As he was seizing, the doctor ordered Ativan. Even though he stopped on his own before the med was given, they gave it to him anyway because it was a repeat seizure. Right after that, Bryan's mom arrived. We'd called her after we got to the ER and knew a little more. She thankfully showed up with orange juice. I told her on the phone I needed something and she brought one for each of us.
While in the ER he had a chest xray and CT of the head. Those both came back normal except for a small pleural effusion we already knew about. Early in the visit we flat out asked the doctor what his plan was for Eli. Was he going to transfer him? We couldn't imagine Eli would be sent home and we didn't think he'd be admitted to our small hospital (not being negative about our hospital, just honest). The doctor (who was very nice but I cannot pronounce or even attempt to spell his name) said he'd transfer him to Peyton Manning Children's Hospital (PMCH) after Eli was definitely stable and some initial testing complete. Because of that, I knew I had to pack!
After the CT was done, I was making a list of things I wanted to pack because I didn't think I'd remember when I got home. While I was working on that, the doctor came in and said some of the blood work was back. Eli's glucose (blood sugar) level was 18. Eighteen? How on earth was he as stable as he was with a level of 18?!? The kid can compensate and mask symptoms like no other. They pushed a dose of dextrose and were starting an IV anti seizure medicine.
I drove home to pack, get a prayer request onto Eli's Facebook page, and hopefully see Zachary. Okay, to be honest, I didn't have a lot to pack for myself because I hadn't fully unpacked from our last admission. I just moved that stuff to a larger suitcase and threw in a few more items. Most important to pack were Eli's things. He doesn't need too much in the way of clothes when he's here, but it's nice to have his shoes so he can walk the halls and go play. Also, we'd left the house in such a hurry we didn't have Pablo. That's his buddy (stuffed penguin) from The Backyardigans. He's been with Eli daily since just before the Fontan in April. He's been to the OR with him, through chest tubes, physical therapy, doctor appointments, etc. We had to bring Pablo. The staff at PMCH knows Pablo as well as they know Eli. I also had to pack pacifiers (he will only use ours) and bottles. He still drinks his milk from a bottle and he refuses to use hospital bottles. Then I packed movies. That's his normal pastime when he's hospitalized. What did I grab? Honestly didn't pay too much attention, I just grabbed about 20 & put them in a box!
While I was at home, I got to talk to Zachary and explain a little bit. Bryan texted saying that they were going to fly Eli to PMCH just because of the distance. I told Zachary that and he said, "Can I fly with him?" Mom, Zachary, & I drove back to the hospital where Bryan and his parents were with Eli. We got to spend some time together. Zachary was content for about 6 minutes before wanting to check out the vending machines. He actually wanted to see the waiting room. I think he knew there was a tv in there which Eli's room did not have. A few minutes later he was eating Cheetos and drinking Coke while in the waiting room. It doesn't take much to make my kids happy.
By this time, Eli's blood sugar was much higher (252!) and his temperature had risen to 97.3. He looked better too. He was getting a little more responsive, but would easily fall back asleep after we disturbed him. The helicopter arrived and took off again to refuel while the two transport nurses assessed him and prepared him for the flight. We tucked Pablo in with him and waited for the chopper to arrive. Zachary was waiting outside with Bryan's parents and my mom. I went to get him so he could say bye to Eli. He reluctantly came in but he really wanted to see the chopper. After I assured him he would see it, he came in to Eli and walked out with us. We kissed Eli goodbye and let the two flight nurses wheel him to the helicopter. We knew he was in good hands and actually in pretty good condition, but that doesn't make it any easier to watch your baby fly off without you.
|Being wheeled to the helipad by the flight nurses|
|Being loaded onto the back of the medical helicopter|
|Words don't capture the feelings in this photo|
They took off about 11:20am. After we couldn't see the helicopter anymore, Bryan and I rushed home. In my infinite packing wisdom I hadn't packed anything for him. I'm a pretty lucky he keeps me around!
Zachary stayed at the house with grandparents and Bryan and I left for Indy. Eli would be there in 45 minutes while we had close to three hours to be on the road. It was almost noon and we hadn't eaten yet so we made ourselves grab something from a drive through. Neither one of us thought anything sounded good but we must've been hungrier than we thought because we finished all of it.
One of the flight nurses called when we were about two hours from the hospital. He said Eli did well on the flight but he did throw up a couple times. They gave him some medicine to help ease that and then he was fine the rest of the trip. He confirmed with us what room Eli was in and who his nurse was. One of Eli's aunts got to the hospital and was allowed to be with him before Bryan and I arrived. She called and told me what nurses were in the room and who his doctor was. We recognized every name she said. We've been here waaaayyy too much lately! It was a big comfort to know who was caring for him while we weren't there. His nurse is one we've had many times. He sometimes knows her as Tickle Monster, but since he was so sick today she was just going by Stacey. Aunt Ashley also took it upon herself to "fix" Eli's hair since it was so messed up from being so sweaty during the seizures. Every two year old needs a mohawk, right? Ashley said he really wasn't awake during any of this, but he would open his eyes and scowl a little at times.
When Bryan and I arrived he was about to have an echocardiogram (ultrasound of the heart). Later he had an EEG (elecroencephalogram which measures the electrical activity of the brain). Eli woke some during the echo and was asking for his bottle. The doctor wanted to keep him on clear liquids because at the time she was unsure if he would have a lumbar puncture and would need sedation. As he woke more throughout the afternoon she determined that wasn't necessary for now. The neurologist came in to examine him and talk with us. Dr. Mott thought the EEG looked pretty good for the most part. He felt that anything abnormal he saw was due to the seizures themselves.
Eli has been more alert as the night progressed. He ate two cups of jello, a small bag of SunChips, some pancakes, bacon, oatmeal, and chocolate pie. He sat on the couch with Bryan for a long time and played with everything. The combination of meds he had this morning was pretty powerful. Combine those with the exhaustion from having two seizures and you've got a pretty doped up toddler on your hands. People were a little surprised he was so awake and alert. As the drugs were wearing off it was like he was drunk. You could see the eyes weren't totally there but it was different than the look he had with the seizures. This we could mock for our sanity. It's been a pretty fun evening!
Why did he have the seizures? A few possibilities.
- he could have a viral infection or meningitis. Those aren't likely since he's not had any fevers, but again this child compensates like nothing I've seen before.
- he could have had a stroke. Because of the multiple heart surgeries and an abnormal heart rhythm, it's not unrealistic to think he had a blood clot that could have traveled to the brain. After the echo, CT, and EEG, the docs don't think this is very likely. Another factor in favor of it NOT being a stroke is that during the seizures he was twitching on both sides. If it were a stroke it would likely have been more on one side. Also, his reflexes and movements are pretty equal on both sides tonight...as they should be.
- it could be related to the low blood sugar. This is actually the most likely culprit. The question is why did his blood sugar drop so low? We aren't sure, but have a couple theories. If there is an infection present, that could lower blood sugar. Another has to do with his feedings. Eli didn't get a tube feeding Friday night. He ate well Friday and had had tube feeding for several nights. We often take a night or two off each week, just so one of us isn't getting up as many times in the night. We also found out that one of his heart meds can have a side effect of lowering blood sugar. Eli's been on this since April and we've been doing the tube feeding 4-5 nights a week since the spring as well. What changed Saturday morning? We don't know. We may not ever know. There's a possibility this could be a random, one time thing.
Our plan now is to monitor his blood sugar, his appetite, and his overall alertness/health/personality. We are still waiting on to see if the blood cultures grow anything. The cardiologist stopped the heart medicine he was on. They may try a new one, but would rather see him be able to stay off it altogether. As of now, we'll follow up with neurology on an outpatient basis. Eli's still on the antiseizure medication (Keppra) and will be at home as well. Neurology would like to get a brain MRI but that will be done in a month or so. He'll have to go to a special facility for it because of having a pacemaker. He'll also have a repeat EEG done at that time to compare to today's.
Right now, we don't have any guesses how long Eli will be in the hospital. Today was too soon to estimate, but maybe tomorrow we'll be able to make more definitive plans. Thursday Eli was supposed to have a marathon of appointments in Indy. He was going to see Infectious Disease, get a chest xray, see two or three providers at the cardiology group and then finish the day with the thoracic surgeon. We're hoping all of them will see him while he's inpatient so we can get that out of the way.
Thank you for the quick response to our prayer request on FB this morning. Seeing how many people are praying and the way the news spreads is a good feeling. Thanks for sharing and helping us. We even had a couple people come to the helipad to see Eli take off. We are very fortunate and want you all to know how much we truly appreciate each of you. Thanks for taking the time to read!