Zoe and Manny update

We did, indeed, get to go home on Friday after the surgery.  Only one night in the hospital is amazing.  Zoe had no troubles with bleeding or breathing so we were outta there!  Her 02 level never went below 98 all night.  (But incidentally we discovered her heart rate goes VERY low while she sleeps... probably a good thing.)

We arrived at home (about 45 minute drive from the hospital).  As soon as I walked in, I checked out Manny's rash Dan was trying to describe. It was all over his back and spreading.  But I also noticed cellulitis around his Gtube site.  (That can land him in the hospital QUICKLY.)

The cure? Antibiotic.  But if we give him antibiotic, it will trigger the c-diff (courtesy of the hospital).  And that will land him in the hospital.

I was home only about 10 minutes when I called his doctor.  She said to bring him right in.  So I got Zoe settled in a comfy couch with covers and a movie, gave her pain meds and antibiotic and headed out.

The whole time I kept thinking, "Please don't send me right back to the hospital!"

My pediatrician is amazing.  We have a great relationship where we both trust each other's judgment and she leans towards the side of being conservative.  She thought the rash was viral.  She didn't think he needed bloodwork since his fever was coming down.  The cellulitis was concerning to her as she remembered how bad it got last time.  (He was fighting for his life!  The Docs gave him a 50/50 chance of pulling through!)  If you want to see those pictures, HERE is a link for that blog post.

When we were in the hospital this last time, we consulted the Infectious Diseases doc and he said that we'd be walking this tight rope for the next few years.  To treat or not to treat with antibiotic.  It's not an easy decision either way.

So my doc called the GI (who wasn't our GI the last time he had this).  He and the Pediatrician came up with a plan.  We would treat with only a topical antibiotic right around the site.  If it improves, we can stay home.  If it worsens in any way, I immediately get to the hospital.  (Yes, I kept my bag packed from Zoe's trip.)

Saturday morning it looked slightly worse so I prayed harder, cleaned more vigorously and applied more liberally.  By Saturday afternoon, it was improving.  As I type this, it's Sunday morning and I took a quick peek while he is still sleeping.  And it's hanging in there.  I have hope that we can stay out of the hospital and not have to take the antibiotic.

Now in the meantime, he has been having these HORRIBLE episodes.  He wakes for 2 plus hours and screams bloody murder.  He is screaming, "Help me" and "Owie" and "No way".  His eyes are open but he's not there.  Nothing helps.  Nothing works.  And then it just stops.

We've been wracking our brains about what this is.  Is he in pain?  Why is he so different in the day than at night? etc.  Last night at our church service, someone suggested Night Terrors.  I don't know if this is right or not but from the little I've read about them, it just might be.  I'm wondering what can be done about it.  This is EXHAUSTING.  It's hard on him too as his heart rate goes over 200.  It's horribly helpless to see this.

I've had kids with horrible nightmares before (especially terribly abused kids in foster care) but nothing remotely close to this.  I should get a video of it sometime just so people can see the raw intensity of this. Well, actually ... I'm hoping it doesn't happen again!