Cyrs

Cyrs

Wednesday, December 11, 2013

Six Week Post-op & an ER Visit

I'll start this 6-week post-op update with the news that Cameron has been doing remarkable! We had our first Parent/Teacher Conference last Friday (Dec 6th), where Cameron's Preschool teacher told us that he has seen vast improvements in many of his skills socially and with his movement, not only from the start of school, but even more so since his surgery. He said he's noticed that he's not quite as impulsive as he had been before, meaning he'd be much more likely to walk up to another student and take a toy out of their hand, but he hasn't done things like that in the last month, really. He also has met some of his goals in physical therapy since surgery - for instance, he did a 1/2 kneel on his right foot, which he had previously not done because his right side was so much weaker and unbalanced. Most people who have interacted with him have noticed how much better this gait pattern is. He's not falling nearly to the extreme that he used to, and he's overall more balanced and confident in his movement. We're pretty sure it's not a coincidence, but we haven't had another appointment with Dr. Morse to discuss it. He had mentioned prior to the surgery that it's possible once they removed the sections of his brain that weren't functioning, it might help other areas to work better. Shawn likes to describe it like a surge protector. If your surge protector stops working, that doesn't mean your TV, computer, DVD player, etc. aren't working, they just need to be plugged into a different outlet. We're hoping that this really is what is happening!

I really had hoped to write this post saying that Cam hasn't had any seizures since his surgery, unfortunately his streak of 5 weeks and 4 days ended on Sunday night. He came down with some sort of stomach bug on Sunday and spent the morning throwing up. Throughout the day we had him resting, watching movies, etc. I went to put him to bed Sunday night and he felt really warm, so I gave him some Tylenol for the fever. Every night when he goes to bed, he sits on my lap and we pray. While he was sitting with me, he jumped, like he was scared of something. So I asked him if he was okay, and he didn't answer. I turned the light on and he looked fine, so I turned it back off and he says "Mom, I said yes." So, we continued to say our bed time prayers, then I picked him up to put him into bed and he was completely limp, totally dead weight in my hands. I laid him down and reached to turn the light on and no sooner did I turn around that I realized he was having a seizure. It happened so fast, and was the worst, most severe one we'd seen. He was unconscious and having a hard time breathing because his mouth was full of saliva. Normally we're supposed to wait 5 minutes before administering the Diazepam, but neither Shawn nor I felt comfortable waiting, so we gave it to him 2 minutes after it started, it took another 4 minutes to stop. In those 4 minutes we got in touch with the Pediatric Neurologist on call at Dartmouth who wanted us to take Cameron to the ER. We've never taken him to the ER for his seizures except for the very first time when he got admitted and diagnosed, so this was a little odd for us. The Dr wanted to make sure there was no underlying problem, because Cam had had a cold, so if he had an upper respiratory infection, or something related to his surgery, it needed to be addressed.


He checked out fine for any signs of meningitis or a UTI, which would be their worries related to his surgery - the ER doc told us it was highly unlikely that he'd have an infection related to his surgery after almost 6 weeks, but they check it all just in case. They also did a chest xray that came back all clear. We spent almost 4 hours in the ER, and were sent home around 12:30am with an order to alternate Ibuprofen & Tylenol to keep his fever down, and to check in with Dr. Morse's office in the morning. The poor kid was so drugged up from the Diazepam, Tylenol and they gave him Motrin in the ER, that he passed out in the loud, busy ER and didn't really wake up until Monday morning. (You can see in this picture that his incision is healing great, too!)


Monday morning, Shawn and I both stayed home to find out what DHMC wanted us to do. We had to go get his labs done, which is a two person job, and wanted to make sure he was okay. Throughout the day he was on & off with the fever, even with being on an alternating dose of Tylenol & Motrin. DHMC decided they wanted Cameron to be on a round-the-clock dose of Lorazepam, which is the medication we used to give him if he had a couple small seizures in a day. The Dr wanted him to take it 2x on Monday, then once in the morning and once at night on Tuesday, regardless of whether he still had a fever or not, as a preventative measure since his seizure threshold was obviously really low. We were willing to do whatever it takes, even though it meant Cam was basically going to be a bit drugged up for the next two days, it was better than the alternative.

When I talked to the nurse, I explained what had happened and the first thing she said was "Oh Cassie, that's heartbreaking." She said not to panic though, that this seizure certainly doesn't mean the surgery didn't work. Their thinking is that his brain is healed enough from surgery for his day-to-day activities to be manageable, but the stress of a 102 fever was too much for his brain to handle so soon after surgery. We are optimistic that it really was just caused by the fever!

Meanwhile, it's Wednesday now so he's no longer on the Lorazepam, thank God - it made him so loopy and even more unbalanced that he had been before! We were sitting at the table eating dinner last night and Shawn & I couldn't help but laugh at some of the things he was saying and doing - he was like a little drunken sailor. Luckily, he hasn't had a fever since Monday night and he's getting back to normal. :)

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