Something is wrong - Oct 2018 Update

Last night I got off the plane and got home around 11 pm. I spent 1 hour sending out emails and tried to get my brain ready for sleep. I had to be at school by 7 am. I know I need sleep, but I am struggling to settle down. Conferences are tonight after all. It's a long day at school. I remember this briefly because my mind is somewhere else. Packing, sub notes, cleaning, laundry...etc.

Emails sent. Long-term sub notes written. Let various people know that I need to leave. I can't be in Mpls anymore. This no longer works for us. We need OUR eyes on Grant and we need real time information. There is something wrong and phone calls leave too much distance when there is this is much concern.

I spent a long weekend in Baltimore. Sucking up as many minutes as I could stroking my son's brown curls. He laid on my lap and occasionally would rotate to rest his head on his dad's lap. Everyone allowed him to do whatever he wished...which was just to watch his iPad and to sleep. The adults chat. There is nothing to do because he can hardly open his eyes. He can't walk independently so he is no longer bouncing around. He doesn't have a song to sing; let alone he can hardly talk.

We had many intense phone calls leading up to this weekend. Grant was in the Hopkins ER for about 3 days getting montiored with EEGs. Before this there were various calls that Grant has started to have seizures outside of ECT.

Today he was getting an MRI.

There is something horribly wrong, but we haven't labeled it. Just a long list of concerns. EEG shows spikes all over his brain. He is put on Depakote so he won't have seizures.

I am so confused. Is he acting like this because he's on a new med? Is it the combo of meds? ECT? No one knows, but they don't think it's from ECT. My mind swirls. Praying I can play "Dr House" if no one else can.

He's drooling. He's posturing. He's seizing. He's coughing if he eats. He appears to not have an appetite. He throws up...I guess he nearly choked on Sat night right after we left. Why can't he hardly open his eyes? Why is he THIS drowsy? There is a large team of dr's and they don't have answers. Not yet.

I can't be home. To try to pretend that everything is ok; it's not. To engulf myself in work is not working for me. I cry every day in worry. Hoping this is nothing. Hoping nothing profound is going to make this child's life any harder than it has been.

A few of you have asked...what can I do? How can I help? There is only one answer and unfortunately it is financial. As much as I don't really want to write these words; I am going to say it once again. Your help is appreciated and needed. There is no pressure. There is no obligation. There are many people and many situations that could use your funds. You have already given so much. But, this is the only answer I have to how you can tangibly help the Carlson's.

My plan was to throw a party in gratitude to each of you that have helped already before he came home. My plan was to bring him home! The things I was concerned about have shifted radically.

I am flying out on Thurs. Scott and I will figure the rest out as we can. I appreciate notes of hello. I appreciate friendship. I would be deeply grateful for any help...as you are helping with the extra financial strain of living out of the RMH house, transportation, and mostly plane trips back and forth. We are struggling to pay back the State of MN for some of his disability financial things (too complex to explain if you aren't on MA and county waivers). There is no way I thought that at our projected discharge we were going to have to start over again. I never imagined I would be sharing that we could use help if you are in a position to do so a year after admission.

Grant is being taken off of all meds to see if his body changes. To see who he is ONCE AGAIN at baseline. ECT has been stopped. He has never looked like this before. I just so much want to share good news. But, I don't have much. On Friday, Grant will have been at the NBU for exactly one year and right now his discharge is no where in sight.

I am hopeful, but I am frightened. Thank you for following my story and sharing if you feel it's appropriate.