October 1, 2015

the drama that is Seth's life sometimes

At the beginning of August, Seth got a cold and then a fever. It started in the morning on a Wednesday and I gave him some ibuprofen. Around noon or one it was really high, like 103.6 high but I gave him some tylenol and the fever went down a bit and he slept. By five that evening, it was high again and this time it didn't go down with medicine so we made an appointment with the after hours clinic at the pediatrician's for 7:30 pm. At seven, after taking his temperature again (103) I was about to get in the car with him when he started zoning out and drooling weird bubbles. This seemed really really wrong so I made Sam and Carter come too so I could sit in the back with Seth. While we were driving, the drool turned into full on foaming at the mouth and his left arm started twitching, then jerking, then his whole body was jerking. A full seizure. Like you picture when you hear the word seizure, not like the ones he's had in the past. Very different. I called the doctor right when we left and they said go straight to the ER so we did. Sam was speeding like crazy and we ran a red light but we made it there. I jumped out of the car and carried Seth, still seizing, and ran into the ER, choking back sobs and barely able to stammer out that my child was seizing. I had to sit and check in for probably less than a minute while the front desk called ahead and got a bed and then they wheeled the two of us in a wheelchair back. I laid him on a bed and then for the next hour, twenty nurses and techs and doctors worked on him. They had to give him a ton of sedatives to get the seizure to stop. It was about 30 minutes long, from starting at home with the drooling to stopping in the ER, which is long. For perspective, we now have a prescription for a rescue med so that if he has another seizure like that, we can give it to him ourselves instead of going to the ER and we are supposed to give it to him if the seizure is longer than 5 minutes. So yeah, 30 minutes is quite long. But the team there at Utah Valley was so amazing and focused and kind to me and I loved them all so much that night.

Anyway, they gave him so much sedation and paralytic that he couldn't breathe on his own so they had to intubate him. Then he was stable and sleeping. They got the fever down too. They did a spinal tap to rule out meningitis and did other tests and bloodwork to figure out what he did have, which turned out to be adenovirus. It normally acts like a cold but sometimes can be really brutal, I guess. Then it was calm for awhile and Sam took Carter home to get ready for bed. Before leaving, Carter spent the whole time sitting in the hall with games on Sam's phone and nurses bringing him Oreos and root beer so I think it wasn't too bad of an ordeal for him. After they left, the medical staff told me that there is no pediatric ICU at Utah Valley so Seth had to be transferred to Primary Children's and protocol is the life flight helicopter, even though he wasn't in any danger really. So that was actually super fun! I got to ride it with him and Sam drove Carter to my mom and dad's for the night and then he met me at Primary Children's. 

Seth stayed knocked out on his meds until about one am and when he started to wake up, they took out his breathing tube. I slept in a little sleeping room for parents for about four or five hours while Sam stayed up with Seth since he was supposed to be awake at work anyway. Then in the morning they released us from the ICU to the regular infant unit with the hopes of going home later that day because he was just normal sick, not really hospital sick anymore. The seizure was declared to be due to the fever with the addition of Seth being prone to seizures in general. But we kept staying because he couldn't keep his oxygen levels up while he slept so he had to keep the little tube in his nose. Sam and I traded off nights since only one of us could stay in the room with Seth overnight. The other one slept at my parents who were still watching Carter, bless them, and then we were back at the hospital first thing in the morning to relieve the poor night duty parent. Let me tell you, sleeping on a little couch in the hospital in a teeny room with an extremely mopey, fussy baby who is miserable and attached to tubes and wires and can't crawl around or sleep well is THE WORST THING EVER. Except for the other worst things ever which really are much worse and I should be slapped in the face for complaining when I knew he was going to be fine. But it was very exhausting. FINALLY on Saturday morning they released us with an oxygen supply to take home. He was actually still on oxygen at night for an entire month which is crazy but the pediatrician told us every week or so when we went in to check his oxygen levels and they were continuously low that sometimes kids just need it for a few weeks even if otherwise they're fine. Which is he is now, thank goodness. It was so weird to be at Primary Children's for something other than tuberous sclerosis.

One of the doctors actually found a growth on his spleen while we were there that is tuberous sclerosis caused. Should be fine as long as it doesn't get too big, doesn't cause any symptoms now. We have had a couple ultrasounds on it and it's about 7 cm, called a hamartoma meaning it's made out of the same tissue as the organ it's growing on, and is holding steady in size. Apparently though, it is quite rare, even for tuberous sclerosis patients to have growths on the spleen so hooray for my over-achieving child. They wanted an MRI of it just for more detail since it is rare and we went in for that a couple days ago but Seth refused to sleep even with the sedation meds. Every time they turned on the MRI machine, he would pop up awake. What a weirdo. This was his third MRI and he'd done fine the first two times. They maxxed out on the sedation and he still was awake. So now we have to schedule it for under general anesthesia, yay. Besides that, we seem to be done with the infantile spasms! Such a little miracle that I didn't think was going to happen. We are off the Sabril, which is the medication for the infantile spasms that can cause permanent vision loss, and we had his final eye exam and no vision damage either! Sigh of relief. For now, medically, he is quite fine, we are just working on catching up his development. He had another assessment a few weeks ago and no significant delays in most categories, except cognitive and receptive communication so we are working hard on those! He is coming right along, I feel. I don't know what the future holds for him, but I am feeling extremely good about things as they stand. 

With all of this for the last couple months, I have been so grateful for my relationship with God. I know He is real and He is there. I have felt Him. He has answered my prayers, over and over. I wouldn't be able to sleep so many nights for worrying about what might be except that I pray for peace and calm and it immediately washes over me. It is a tangible thing, the Spirit. So easy to dismiss when you hear someone else talk about it, but so undeniably real when you seek for it and experience it yourself. I read a quote recently from President Henry B. Eyring that expressed so perfectly how I've been feeling: "We all know that human judgment and logical thinking will not be enough to get answers to the questions that matter most in life. We need revelation from God. And we will need not just one revelation in a time of stress, but we need a constantly renewed stream. We need not just one flash of light and comfort but we need the continuing blessing of communication with God." YES. I can't live without it.


Penny 10/1/15, 6:43 PM  

Oh Krista I love how strong and faithful you are. Glad that your baby is doing so much better. Hugs to you. Love ya!

Katie 10/2/15, 3:02 PM  

He is such a handsome little man. And you, my dear, are the bravest. Love you.

Betty 10/2/15, 4:18 PM  

I just want to reach out and grab that awesome little bundle of cuteness! And thank you for your inspiring words about God and the Spirit. You are so right.

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