Wednesday, February 10, 2016

CHD Awareness and another seizure

Hello everyone!

Its been a while, and there's a lot to update. First, with the MRI and Neurology, we finally heard back from Dr H. She basically told us that there's a few things to be learned from the MRI. Atticus will always be at risk for seizures. (Boo, and that will be reiterated shortly...). She also said that due to the age of Atticus at the time the bleed happened, you can't look at his MRI the way you would an adult's.  Since his brain was still forming at the time, many of the damaged pathways were "rerouted". We can't look at it and say, "This part of his brain was damaged, so we can expect xyz to be affected."  Her recommendation is to have a full neuropsychological evaluation done on him (which would be repeated yearly), to try to understand exactly how Atticus' brain was affected and a get better idea of what to expect from that.  We have that appointment (with a new doc) set for April. I'll update once we have a chance to learn more.

Next on the list of updates, Atticus had another seizure today. This one was probably the worst one since the first one at the end of 2014.  He had crawled into my bed early this morning after the Hubbie had left for work.  At around 8:30AM, he coughed hard like he was going to throw up, so I scooped him up and ran him to the bathroom. He didn't throw up, but decided he wanted to sit on the toilet to go potty.  He walked out of the bathroom, and I decided to take a turn. Atticus walked into the living room, where my Mom was changing the baby's diaper, still half naked, holding his undies. My mom fussed at him to put his clothes on, but she noticed he seemed confused/dazed. She held his undies open for him to step into, but he couldn't pick his leg up more than a quarter inch off the ground. So she guided him into her lap, and he began to stiffen, straining his head to the right, and slightly twitching. He was having a seizure. Mom called to me, I hurried up in the bathroom and came running. I moved him from her lap to his side, and held his head while he seized. It lasted for over 5 minutes. He had drooled thick mucus all over my arm and the floor, so I cleaned off quickly after he had come to, and moved him into my bed to get him comfortable. Normally, Atticus will immediately be drained and pass right out for about 2-3 hrs.  Today, he would toss and turn, struggle to get comfortable, fall asleep for a little while, then wake up to puke thick mucus/bile, and go right back to sleep.  He slept for almost 6 hours. Every time he would puke, his heart would race upwards of 175bpm, and take several minutes to come back down.  During this time, I called Dr H's office, and they decided to up his dosage of Keppra from 3ml twice a day to 4ml/2x daily.  Since he had "returned to baseline", we didn't need to go to the hospital, unless we felt something else was wrong.  Thankfully, by this evening, he was back to watching TV and eating/drinking with no more nausea.  I'm still struggling to get him in bed for tonight, lol!

As you may know, this is CHD Awareness Week.  We made another submission to Mended Little Heart's #RockyourScar contest. I even managed to get all 4 kiddos in it!  Its crazy to think that just 4 days before today's seizure, we were all laughing and making this photo. Today reminded me of just how fragile Atticus really is, despite how tough he always seems. He's my little red headed fireball, but today that flame was burning low. He just looked pale and frail. He struggled to breathe at times. He fought. And he won again for today.  It reminded me why CHD Awareness is so important because there are so many children fighting each day.  There are some who are living life to its fullest, and those struggling to stay in the fight. There are those who are undiagnosed until its too late.  There are those who lose their battles. 1 in 100 children are born with a CHD.  1 in 5 of those children won't make it to their first birthday.  CHD research is vastly underfunded.  Its the number one killer of children in the US, yet receives a fraction of the research money it needs, pennies on the dollar compared to cancer research, adult heart research, etc. The more awareness we can raise, the better research and procedures that can be developed.  The better the research, the more lives that can be saved, and the fewer "unfortunate" incidents (like what happened with Atticus) will happen.

I know that through all the things that have happened on this journey with Atticus, my God has a plan.  This path has led me to understand a fraction of the love God must have for us.  This journey has taught me how to love everyone better because CHD doesn't discriminate. It affects the rich, the poor, black, white, asain, hispanic, etc.  It has shown me that many things are out of my control, but I can bring it all to Him in prayer, and I can spread awareness.  And so can you. Love the people around you. Hugs your babies a little tighter because you're never promised tomorrow with them. Forgive a little faster. And as always, keep on prayin'!

Our submission for 2016!