Milo Braveheart

Our little boy Milo, born on August 29th, 2011 has a congenital heart defect called hypoplastic left heart syndrome (HLHS). Basically it means that the left side of his heart did not develop as it should have and he has had to have quite a few complex surgeries. This is his story.. #milobraveheart

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Scheduled EEG. Trying to figure out why Milo has seizures. According to the technician everything looks pretty normal.

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All of the superheroes at Universal Studios were sporting Happy buttons yesterday!

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Nightclubbing with Milo last night During Mickey’s Christmas Party!

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One of the countless highlights from today! It really was an incredibly magical experience. I’ll have to do a proper post later... too tired! :-)

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Make-A-Wish GA threw a reveal party for Milo’s Wish trip! It was at his Granprent’s house so it would be a surprise!

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Out of the hospital a little after five today. He was super happy, but did not want his picture taken. Best I could do. LOL

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Hour long EEG. If it looks good we are outta here soon after!

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Almost Back To Normal

Milo slept well last night. He is acting much more like himself. He’s very happy, but still kinda weak. He also ate his breakfast like a champ this morning. They might not even do an EEG now. My brain is only doing short sentences today..Need coffee.  LOL

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Already chillin with DJ Lance in the step down unit!

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Update

Milo is doing much better. He’s really cranky and wants to go home, but he’s resting well. He also tested positive for Rhinovirus and Corona virus which isn’t too surprising since he’s been sick for about a week or so. We are gonna be here tonight for observation and have an EEG tomorrow morning.

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Neuronal degeneration is the most severe long-term consequence of repetitive seizures in patients with epilepsy, which until now was thought

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Low Oxygen During Seizures Tied to Heart Problems : Neurology Today

An abstract is unavailable.

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2759044/#!po=2.17391

For later

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The tube is out and he is resting and breathing well! His heart looks fine. The plan right now is to keep him here overnight and if everything is okay, go home in the morning. They are upping his dosage of Kepra. Hopefully that will do the trick.

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What happened

Recap: Seems like just another typical Milo seizure so far. He was standing, taking to Julie in the living room and just spaced out. He became less and less responsive and after 7 or eight minutes, we administered Diazepam. Over the next twenty five minutes he would stay unresponsive for the most part.

He would briefly respond to sternal rubbing then go back out. His O2 saturation kept dropping and he would stop breathing for a few seconds at the time as he usually does. We drove him to the ER. On the way he did vomit once as per his usual. I really want to get an oxygen tank and a non rebreather in case this ever happens again.

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Sleeping well.