Thursday, January 20, 2011

Little did I know.....

I didn't actually think that "Seizure Watch" was going to include a seizure. At this point, anytime Ethan has a fever, a seizure should be somewhat expected. Even though I know this, it still really catches me off guard, and is very difficult for me to go through.

What happened?
I had some recent confusion about Ethan's Tylenol dosage. I thought he could only have it every 6 hours. Which was the case when he was on infant suppositories. Now that he's older he can have it every 4 hours (which I was unaware of yesterday). So, around 3:00 (4 1/2 hours after the initial Tylenol) his fever started coming back. I called in to the advice nurse to see what I could do. She let me know he could have more Tylenol, so by 3:30 it was back in him. By this point, it was clear he wasn't feeling very good. He seemed sleepy, but wasn't going to sleep. He was very snuggly, so I just held him and sat in bed, relishing in the extra baby snuggles. Usually the Tylenol starts to kick in within a few minutes. This time, that was not the case..... By 4:00 his fever was still around 100.3. This isn't very high, but for Ethan it doesn't have to be very high to be problematic. At 4:09, the seizure started. Ethan's eyes suddenly popped wide open, and he let out a very scared scream, and then started seizing. The phone was next to me, so I called 911, and tried my very best to stay calm and patient. Ethan became a tad alert about 7 minutes after it started. One of the EMT's remembered us, from back in August. This time, we had a lot more information for him. They read over the letters from the metabolic doctor, and our pediatrician, and lovingly held Ethan as I got a few things together, and made a quick call to Daddy to let him know he needed to meet us at the ER. We quickly got in the ambulance and were off to the ER. I started feeling silly for taking an ambulance to the ER, but the EMT was very quick to make sure that I knew it was the right thing to do, and that I should never feel embarrassed about it.

We got to the ER, and quickly had a team of nurses preparing to get an IV started. Three different people looked at him, and one finally decided she was up for the task. She was able to get the IV in, but for some reason was not able to draw blood from it. So, they asked someone from the lab to come down. In came a loud, slightly obnoxious, tech who took about 30 minutes to poke Ethan in his arm, and ankle before she decided she wasn't going to be able to draw blood..... Ethan was not happy about this..... She finally decided to do a heal prick, and draw blood from there. It worked, but was excruciatingly slow. Eventually, the blood was drawn, and we were finally left alone. During the ins and outs of the blood draw, the ER doctor came in to evaluate Ethan, he quickly found a double ear infection. Ethan's pediatrician Dr. Pelinka came down to visit us, and came up with a plan, which she relayed to the ER doc. They were going to give him a few hours of his special IV fluids, add some antibiotics, and then we should be on our way. By 8:00 I realized that he was getting hot again, and that he was supposed to have Tylenol at 7:30. I asked the nurse to bring some, it was there around 8:15. Before they gave the Tylenol, they checked his temp. It was up to 102.9!! I was really shocked. I knew he was warm, but he had for the first time since his seizure, started perking up and seeming like he was feeling better. So, apparently at 100.3, he has a seizure, but at 102.9, he feels great.... Only Ethan! I was SO relieved that he didnt have another seizure. His seizures are so inconsistent, which is quite confusing. The Tylenol slowly started kicking in, and within the hour the fever started coming down. Finally by 10:00 they were ready to start the antibiotics. The IV was causing some issues, which Ethan was not happy about, but they finally got it started. About 45 minutes later, we were finally ready to come home. We got home, bathed Ethan, and were ready for bed. Eric stayed up with him while I got a little sleep. The fever was coming back again, and at 12:15 we were able to give him some more Tylenol. Again, the fever was very slow to go away. Eric ended up laying on the couch while Ethan slept. He kept a close eye on the pesky fever, and was up until 4:30 with him, at which time he brought him upstairs, we re-dosed him, nursed him, and all fell asleep on our bed. Ethan woke up around 8:30, and seemed to be in a pretty good mood. The fever has still been around a little today, but nothing like yesterday. Eric and I have taken turns getting caught up on sleep. This afternoon, we go back for a recheck of his ears, and an antibiotic shot.

It's still so crazy to me, that an ear infection can turn into such an ordeal. It's not easy, but we're getting better at handling it.

Wednesday, January 19, 2011

Seizure Watch

I'm sitting here, officially on "seizure watch". Ethan had an abnormally rough night of sleep last night, which I now realize, he probably wasn't feeling very good. This morning, my friend Becky, and her daughter Brynlee came by to hang out. Becky noticed that Ethan was feeling a bit warm. Sure enough, he had a 100.3 fever. Inside, I immediately started panicking. He's had febrile seizures on 2 occasions, each time ended in an ambulance ride, and at least 1 night in the hospital. As you can imagine, the onset of a fever now causes me a bit of anxiety. Obviously me being anxious and stressed out doesn't help anything. Instead, I decided to "Mom Up" (you can read about my new favorite phrase here) I washed my hands, gently administered his tylenol suppository, and went back to bff chit chat. Now, Ethan is napping, laying next to me on my bed. I'm watching the Australian Open, and trying not to freak out at every little twitch. It doesn't make sense to me that if the fever is being controlled, that he still might have a seizure, but both my pediatrician, and neurologist were very clear that Tylenol does not prove to prevent febrile seizures. So, for now, we treat the fever, try to keep his fluids up, and just keep a very close eye on him.

Other than not feeling so hot today, Ethan's been doing great. He's got such a strong desire to move. He's working hard at trying to pull himself up to stand. He's still not quite able to do it, but his efforts are unmatched. In the last few weeks, Ethan's had a "Modified Barium Swallow Study", saw the Neurologist, and his pediatrician. During the swallow study, Ethan was hooked up to a live xray machine, and was fed liquids of different consistencies with die (barium) that showed up on the x-ray machine. It was really neat to watch. On the x-ray, would could see from his shoulders up. I was able to see his 2 year molars, sitting below his gums. They started out giving him thick chunky pudding, then a thick milkshake, then thinner milkshake, and ended with a juice consistency. He did well with everything except the thin juice. He doesn't actually swallow it, he lets it fall to the back of his mouth, it stops in his throat for a few moments, and then goes down his esophagus. They said that the way he moves food around his mouth, and swallows is a bit immature. This likely has to do with the low muscle tone, and just goes along with the rest of the delays.

The Neurology appointment went well. The Neurologist said that as long as Ethan has a fever anytime he has a seizure, they will continue to assume he has febrile seizures, and not a seizure disorder. He agreed with the pediatrician, that anytime he has a seizure he needs to go to the ER to have blood work done. Because of his metabolic disorder, anytime anything traumatic happens they need to make sure that the acids in his blood aren't out of control.

All in all we're doing pretty well. We've been filling our days with play dates, working out, working, and just living life. Things seem pretty hectic, but we're enjoying it. :)
In the waiting room for the swallow study.

Prepping for the swallow study.

After the swallow study, we met Hannah, Jackson and their mommies at the mall.

Ethan is playing with his new friend Finley.

Ethan and Addison hanging out at the Library.

Brynlee is teaching Ethan how to hi-5.

Ethan and I celebrating my birthday.

We went to Red Robin for dinner on my birthday.

Mirrors are cool!

Saturday, January 1, 2011

It's time to bloom.

In the last few days, Ethan has REALLY blossomed. The night before Ethan's first birthday, he had gone down for the night, and like many nights woke up a few hours later. Eric went into his room to get him, and noticed he was sitting up in his crib. Eric was quite shocked to see this, as we had not seen Ethan sit himself up before. Then, a few weeks later, the night before his surgery, I found him sitting up in his crib. Both times he seemed a bit shocked, and not quite sure how he got there. Then, 2 days ago, Ethan and Eric were laying in bed. Ethan loves to lay with us, roll around on the bed, blow raspberries on our bellies, and just hang out. This time, Ethan was laying parallel to Eric on his tummy, he leaned in towards Eric, scooched his knees underneath himself, and slowly started scooching his feet underneath him until he was at a point where he could then just push up on his hands, and sit up. This was the first time we had seen him actually do it himself. In the last few days since then, he's done it a few dozen times. He's so proud of himself, and really gets a kick out of Daddy and I being excited for him. This seemed to really spark an interest in movement. For the last few weeks, he's been really interested in standing, and pulling up to stand. But it really seems like in the last few days, he's began to put the pieces together and is really figuring out how to do things on his own. He's also starting show a great interest in learning to crawl. Until now, he really hasn't been that interested in anything out of arms reach, but now he's quite motivated to try to move a couple feet. Because of the extensive flexibility in his hips, this requires a tremendous amount of strength in his legs, and core to compensate. But, because of the low muscle tone, his muscles don't really have the stamina to accommodate this new desire to move. He's working so hard now, and is having so much fun with it. In the last few days in particular, he's also become a lot more chatty, and is quite excited when Eric and I chat back in his language. There's a whole new fire in him, and he's now ready to start really exploring the world around him.

Neurodevelopment Assessment-
 Two days before Christmas Ethan had an assessment done at the CDRC (Child Development and Rehab Center). This included testing from an Occupational Therapist, Physical Therapist, and Developmental Pediatrician (Dr. Peterson). The OT/PT tested Ethan's motor skills, and asked us a bunch of questions about how he moves, communicates, plays, eats... etc. Ethan tested with about a 40% delay in all areas. I asked Dr. Peterson if Ethan would be able to grow out of the delays, or if he would always be a little delayed. Dr. Peterson explained that it's not until a child is around 5 years old that you can get an idea for the extent of the delays. If Ethan is still testing around 40% delayed when he's 5, then he'll probably always be like that. For now, they're going to assess him every 4 months and track his development. They want to ensure that he doesn't fall further behind, and that when possible, he begins to bridge the gap from where he currently is to where he "should be". Dr. Peterson was also becoming a little concerned about Ethan's weight gain, or lack there of. He's actually lost about 1/2 a pound over the last few months. His weight is still normal, but his lack of growth is not normal. Because of all of the eating issues that Ethan has had, I had become a bit lazy in feeding him. Nursing is easy, and stress free for both of us, so I had been primarily nursing him. Dr. Peterson suggested that I give him at least 1 bottle of breast milk a day, and mix in 2 tsp. of dry formula. This way, Ethan would be getting more calories in the milk, without adding volume to the milk. Pumping enough milk to do this is a bit of a pain, so instead I decided to "mom up" and try to push through the feeding issues. Instead of worrying so much about what I thought Ethan should be eating, I catered to giving him food that I know he likes. It got him into a good rhythm and he's beginning to eat much better. He's still not at all interested in table food, but he's eating purees well, and I'm fine with that. This appointment really brought me a lot of peace. Until then, I had been judging myself as a mother based on Ethan's development. This helped me to really see that Ethan is developing at his own pace, and that his pace doesn't reflect my efforts. One of my biggest concerns about his slow development is fear that it was a sign of an underlying issue. For now, I've become at peace with not knowing. I've become to take each day as it comes, to encourage him to do what he can do, and not what I think he should be doing. I feel like all of his medical issues have really taken a lot of joy out of being his mom, and just enjoying him for who he is. This new found peace has really enabled me to really just enjoy playing with Ethan, and meeting him where he is.

Unfortunately, we left our camera at grandma's over Christmas, so we don't have any new pictures. Hopefully soon.

If you get a chance, please check out this blog about Scarlett. Brandi, Scarlett's mom, has an amazing attitude, and has done a great job of chronicling this excrutiating journey.