Emotional Roller Coaster

It's called the 'ICU Roller Coaster.' I've prepared family members for this occurrence many times. 'It'll get worse before it gets better.' 'There will be good days and bad days.' 'Prepare yourself.' 

It's completely different when you're on this side. When it's your family member. When it's your child.

We've gone from days of being touch and go, not knowing if we'd make it through the night to laughing and smiling. 

How exhausting. How miserable. 

We've been here 5 weeks and 1 day. Todd's had multiple complications. 

1. Pulmonary edema, pleural effusions, pneumonia...
2. Cardiac arrest, bradycardia, congestive heart failure, increased BNP, fever
3. Lethargy, neurological deficits, unable to follow commands
4. Constipation, impaired gastric motility
5. Ascites, fluid overload, 3rd spacing
6. Impaired kidney function, inability to expel bladder, increased creatinine 

& many more...

I treasure the days when he used to smile. When he used to laugh. The days when he looked at me and I knew he recognized me. He hasn't woken up since his surgery 8 days ago. I keep reminding myself he's on a lot of medication, but he already had neurological deficits before that. 

I try to stay hopeful. I try to stay positive. I hang on to those moments. We were lucky enough to capture some on camera. It's hard to get excited when he's doing well. It's hard to keep from getting pessimistic. Then you beat yourself up when you slip up and have pessimistic thoughts. It's hard to not feel utterly defeated when we've had a quiet couple of days where we've been moving in the right direction and then all of a sudden something happens. Something unexpected. 

When people ask how he's doing it's hard to answer. He's not fine. This isn't normal for my child. He won't be fine till he's home, laughing, running around and playing. At the same time, you can't say that he isn't doing good. People jump to the worst conclusions. What do you say? The question itself sends you on a roller coaster. How do I REALLY feel about how he's doing? Am I being overly hopeful? Am I being optimistic or unrealistic? One thing goes right, but then four more go wrong. 

At one point we thought we'd be in rehab by now. Rehab isn't even on the table right now. Too many complications. 

There isn't much you can do for yourself at this point. You just have to finish the ride.