The transitions: Circle of Life
These past few days have been a lot to take in. I honestly don't even know where to start with my blog for tonight. I am sitting in the PICU with AJ at Lurie's Children Hospital and the emotions are definitely brewing. It was only supposed to be a quick test, an hour top. A recorded analysis of AJ's brain activity, to be exact. We had intentions of going home!
Late last week, I mentioned the possibility of AJ having seizures and it was confirmed with an EEG. After the test was complete, the technician said that the Doctor would be in to consult the results, as this is standard procedure. I thought that was odd, considering I originally had to make two appointments; One for an EEG on Tuesday and another to go over the results of that EEG and talk medication. At this point, it didn't take my degree in psychology to tell me that this girl was bold face lying to me about standard procedure. I mean, during his exam her mouth was practically on the floor, obviously a dead giveaway. Only, I was expecting for them to expedite his process and prescribe a medication, not admit him into the ICU.
I had no choice but to comply, especially when the Doctor stated it was against her "medical advice" for AJ to be going home without further testing. She said she wouldn't be comfortable letting him go home after reviewing his results. Of course, me being me, I started to cry and press into her about what the results showed. In the beginning, the Doctor kept talking in circles about his brain activity being abnormal. I rebuttal that of course it's abnormal, he has a rare chromosome disorder. Finally, she told me that his activity in the brain shows constant seizures, despite his body's nonreaction to one. She said to me it may appear that AJ is stretching or having an involuntary movement when in fact, it's a seizure.
Well, now I am sold. I told her AJ obviously can't go home like this. They actually need to hurry up and get a room for AJ so they can figure out how to help him! When the Doctor left, I called my husband to update him on what was going on. Back at home, all the kids were there, and Julius had to be at work in a few hours. The boys had no school due to it being a voting day and August was home sick from daycare. We'd anticipated my return at a certain time but had no choice but to change course. This isn't unusual for us, to work around AJ's schedule. It's something we've learned how to manage without becoming flustered or frustrated. AJ's health triumphs everything in our life. But that doesn't mean I didn't feel awful that I had to cancel on picking my mom up from work and that my husband had to call off of work. But we all understand that AJ needs support.
As of today, AJ is still hooked up to an EEG monitor and taking Keppra for his seizures. The Doctors still have to figure out dosage, frequency, and if it's appropriate for AJ. While being admitted, he has also had an MRI taken and will have an EKG. They have brought up concerns about AJ's dry cough and if it's related to his VSD worsening. I'd say all options are being explored at the moment. We don't have a date of when AJ will be able to come home, but we remain optimistic. AJ has a lot of prayer warriors and I have faith that he will be back home, chilling with his brothers in no time.
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