Exhaustion

We finally made it to rehab. I don't know if my expectations had been built up or if I was simply being unrealistic or it could have just been that it's been an exhausting experience and journey to get here.

Maybe I just need to process and decompress.

Our ICU discharge day/rehab admission day wound up being a 19 hour day for me. Of course I was up much earlier than I needed to be... I was anxious. The long awaited exodus from the hospital. Not to mention... would it actually happen that day? We were sitting on 'Go' for over a week. I had momentarily forgotten how lucky we were that we had been at Shands so long that our nurses 'knew' Todd. It was utterly exhausting to argue with nurse after nurse about how to give him meds, setup his tube feeds, when to give meds etc... I'm still not sure how I contained myself. It didn't help that they do 3 shifts here. So we go through 3 nurses a day.... having the same conversation with each of them...

Oddly enough the nursing is what left more to be desired... the therapists are amazing. You would think I would be more defensive of nursing since it is my profession... maybe that just means I'm overly critical... or maybe it doesn't matter because this is my child we are talking about here.

This whole situation is such a giant roller coaster. I have really good days... and really bad days. Yesterday was a bad day. Simply for the fact that I'm exhausted. I don't have patience to begin with. The little I do have goes out the window when I'm tired.

I know typically, after a traumatic experience, patient's families need a lot of education. Not to say that I don't but, please evaluate what conversations I have had already and haven't. Drilling it into my head that my son has a brain injury and that it will be a long time before he recovers, if at all, is not necessary. I promise you I'm aware.

'What type of equipment and therapies were you using at home before hospitalization?' ... Do your F#$K!N& research! I had a perfectly healthy child before this. READ HIS CHART! It says on the first line of his health summary that he was a perfectly healthy child that went into cardiac arrest. So many people have ASSUMED he had deficits before this. No. No he didn't. He was one of the best students in his class. He was constantly outside running around with other kids. Playing sports. Had no social issues. Maybe too social if nothing else. He was absolutely PERFECT... this causes me to have to go and explain what happened, everything we did to try to prevent this... essentially causing me to relive everything. I'm never going to be able to cope and deal with this if you don't do your homework and at least read up on what happened. It amazes me the amount of health care professionals that will walk into a patient's room without reading their chart.

I am over the neuro storms. I hate the word. I hate the concept. I hate that they exist. I hate everything about  them. We finally got him on an amazing medication regimen that was perfect for therapy. He got his nap in between morning and afternoon sessions and he was alert and interactive during the right times. All of the times got messed up during the transfer and it has taken over 24 hours to reorganize everything. So yes, he is going to be more agitated. His meds aren't being spaced how they were. We were in the ICU for 72 days. Do you know how long it took us to find a good schedule? Yeah... don't go messing that up. Then, before we get everything back in order and you come in and see that he's agitated don't say to me, 'Oh! Is he still storming?' NO. HE HAS NOT BEEN STORMING FOR OVER A MONTH. Yes, he has been agitated. Wouldn't you be if this happened to you? Brain injury or not? So when his meds were given at an inadequate time and the nap he needed got interrupted to recast his feet which is painful and then you want to come in and do a cognitive assessment... of course he isn't going to cooperate as well.

I just want to take him home. I'm so excited about the therapies and everything, but as far as giving his medications, feeding him, activity... I just want to go home.

I miss him waking me up in the mornings on the weekends. I miss the snuggling. I miss him calling me Mommy. I miss the crazy things he used to say. I miss his happiness and energy.