This post has photos of Bub in the hospital. They are difficult to see and if it may bother you, you might not want to read this one. However, I want to remember every detail and this blog is my place to our store memories. So it is your choice to read or not...
If you didn't read part one, you can catch up here...
I told Rebecca goodbye and hopped in the SUV and headed to Denver. I called my Mom and thanked her for calling Rebecca. She had called my Aunt Susan who lives an hour and a half away and asked her to meet me at the hospital to help with the kids until Doc's parents got there. They had left Wichita that afternoon and drove straight to Denver.
I busied myself with making and receiving phone calls as I drove to Denver, I talked to my Dad, Birdie, our pastor's wife, my sister in law, and a friend through Birdie who lives in the area (who was sitting in her car when she called, ready to come to my side if needed.) I was overwhelmed with support and love. And convinced that God had our situation under control.
Doc called me and told me that the helicopter had landed safely and he was at the hospital with Bub in the Pediatric Intensive Care Unit (the PICU). They were hooking him up to an EEG which is a test where they put little electrodes on his head to monitor brain activity in order to make sure he wasn't having any more seizures.
I got to the hospital and met Doc outside the PICU. My Aunt and Uncle arrived about 5 minutes later. Doc and the crew went downstairs to get a bite to eat. I went into the PICU to see Bub. Nothing can prepare a Mommy's heart to see this...
He was sedated but periodically woke up and tried to get to the tubes in his mouth. His arms were in restraints so that he couldn't pull them out.
That was hands down the hardest part...when he woke up. The nurse would give him a bolus of one of the sedatives and he would fall back asleep. Our only consolation was that we knew he wouldn't remember any of it.
After Doc and the crew grabbed a bite, we left and went to a hotel where Doc had rented a room for the kids. We got the kids tucked in and my Aunt and Uncle stayed with them while I ran and got diapers and wipes at Walgreens.
It was so surreal. Doc and I had no idea why this had happened. And let me tell you, when Doc doesn't understand something like this, it makes me panic. He is a virtual dictionary of medicine. Through out the whole thing, even in the panicky moments, I had an inexplicable peace over all.
I hurried back to the hotel and soon after my Aunt and Uncle left to go home and my In-Laws arrived. I headed back to the hospital. I had packed a bag for Doc and me and had packed Bub's little Spiderman backpack full of the stuff he would need. I got out of the SUV and grabbed the bags and headed into the hospital. As I crossed the street, I thought to myself, "I should have grabbed my bag with my hair stuff in it. My hair feels gross and I really need a hair band." I took two steps and looked down. There was a blue hair band right there. I stooped and picked it up and it hit me like a ton of bricks...
God had this thing. Every. Little. Detail. Down to my stupid hair band. He would provide all our needs according to his riches in glory. He had been faithful up to that point and it took something so silly as a hair band to make me realize that God was in the DETAILS. His hand was over all this. Not that he made it happen or wanted it to happen but he provided what we needed to get through it. I made it to Bub's room and told Doc about the hair band. He smiled and teared up, shaking his head.
We made up the extra bed in the hospital room. I took the first 4 hour shift by Bub's bed and Doc took the second. I held his little hand and prayed and dozed off and on. We always made sure to hold his hand because as he would come out of sedation, his little fingers would twitch first. We knew it was coming and we would motion for the nurse to give him more sedation. Then we would calm him and help him keep his head on his pillow until the sedation kicked in. He would gag and look at us and tears would run out of the corners of his eyes and our hearts would break in a million pieces. But, we knew a couple things...one, it had to be done for the EEG. And two, he was indicating he was having normal responses to the situation which was a very good thing. I would tell him to lay back down and he would shake his head "No". His nurse said, "He's feisty. Even under sedation. That's good." He even mouthed to Doc at one time, "I want Mommy." All we could do was comfort him in those moments and assure him we were there and he was safe.
The next morning around 5 am they came in and took off the EEG stuff. The test was completely normal. Another good sign.
The last test would be an MRI. We had to keep him sedated for another 5 and a half hours because the test wouldn't be done until 10:30. That did not please Doc. Especially when we found out that the patient before him in the MRI was there for an ankle injury. The MRI would check for masses or abnormalities. I went down with him while Doc returned the rental car. Bub's nurse Chip was such a comfort. He was seasoned, calm and funny. Just what we needed. Chip gave Bub a bolus of his medicine and they put him in the MRI machine. I sat in the room for 30 minutes pushing in my ear plugs to try to block more of the noisy test and watching back and forth between my little boy's legs (making sure he wasn't flinching and waking up) and the radiological tech and Chip's faces for any little sign of concern.
By the time the test was over, I was pretty confident that things were ok. They were joking and smiling. But I didn't ask them the results. They couldn't have told me anyway.
Doc met us back in the room after the MRI. They let him come out of sedation and he did quickly. And he wanted those tubes OUT. We were so relieved. All of us. He asked his Daddy, "Where am I?" Doc let him know that he had gotten sick and he was now at the hospital. He asked if he could go back to the cabin now. He also wanted to know why his throat was scratchy. And we explained that he had, had those tubes down there to help him breathe and that his voice would be back soon. Especially if he ate some popcicles.
He had oxygen on for a short while and he didn't even really need it. The neurologist, Dr. Parsons, was amazing. She came in and told us that the MRI was normal. She talked to us about what she thought had happened. She surmised that he had a perfect storm of Altitude Sickness, a bit of dehydration, over exertion, and maybe even a shortage of sleep caused some brain swelling that triggered the seizure. He had no signs of Epilepsy or any other problem that would indicate more seizures.
They kept Bub and monitored him over the next night. They also gave him an anti-seizure medicine called Keppra. Which we kept him on until we made it back to Wichita (we didn't want him to have another seizure on I-70 in the middle of nowhere). Then promptly tapered him off of quickly because he acted completely drunk when on it.
Chip was truly wonderful. He picked up on the things that were important to Bub. He got Bub a Star Wars character, coloring book, crayons, and a Lego kit to put together. What a guy! He was also the most amazing patient advocate!
Here's some shots of the hospital. It was an amazing place and Doc and I felt confident that if things had taken a turn for the worst, we were at the very best place possible!
One of our nurses even found a pillowcase that was bright and cheerful for Bub. It was his favorite colors (orange and green) and had monkeys on it. He kept saying he was a "monkey lemur" while he was climbing the mountains. So it was perfect. See what I mean. There was nothing random about our experience. It was just what he needed.
When it was time to be released, Bub was goofy from the Keppra but completely happy to go home. He had been crying for his siblings that morning.
We escorted him out of the hospital in a wagon.
I rode with him in the back seat all the way home. His memory was all there but everything was a tick s-l-o-w. By Saturday, we were convinced that we needed to get him off the medicine. Even with a half dose, he couldn't walk a straight line and was completely goofy. By Saturday evening, he was MUCH better. And by Sunday morning he was asking to go to church and wanted to go swimming that afternoon.
He is sleeping in our room, not that we expect him to seize again, but it makes both Doc and I feel a little better. And he's supposed to start all day kindergarten tomorrow. Both of us are nervous about that. We are going to pick him up early this week and have him only go half a day for the first week. I don't like the idea of sending my kid to school with a "seizure action plan" but if God walked with us this far, he will be faithful from here on out. No reason not to trust him.
God is good. If you don't know him, please ask me, phone me, text me, email me, message me, facebook me or talk to someone else that knows Him. Seriously. He loves you and wants you to know him intimately. He's awesome. And life with Him will not magically become perfect but you won't have to do it alone. He is always there.
If you are already in "the family," please make yourself available to be God's hands and feet in this world, like so many people did for us. We can love each other and be His love to those who don't know him. What a privilege to give and receive that love.