Feb 28, 2011

Glimmer of hope

Last night was tough ... lots of awakening for some strange reason.  And today he woke up very grumpy but as the day settled on, he became himself.  He's even not screaming as much when people come in. 

Which is good because he's screamed so much that he's hoarse.  He sounds so pitiful! 

For those who can't remember, here's an old picture showing his out of the hospital personality! And that's big brother Sam (9)

The glimmer of hope is that he tolerated the 1/4 feeds for 24 hours with no poops since 11am Sunday.  (As I type this it's 6pm Monday and still no poop so we're going too far the other way.)  BUT ... Dr. Cuenca changed the feeds to 1/2 for 8 hours (2-10pm), then 3/4 strength for 8 hours (10pm-6am) and then full strength for 8 hours (6am-2pm).  If he has no troubles ... we can go home tomorrow night or Wednesday morning. 

I entreated them to send us home tomorrow night if possible as Wednesday is my birthday and I'd so like to be home.  They're working on it. 

So he just has to have 1-2 poops/day max.  No fever.  No retching.  If so, we are cleared for home! 

Mom came by again with some goodies and an offer to watch him while I could run to the store and get whatever I wanted.  It was right after I got this news so I felt relieved.  I walked out of the hospital for the first time.  (I don't leave the room normally!)  In all the times I've been in the hospital with him, I've never left him for even 5 minutes so this was new.  But I knew he was in great hands with "Mimi" (Grandma). 

Just ran to walgreens and mcdonalds but it was FREEDOM! and oh so nice.  Grabbed a couple of comfort things and back I rushed.  But it was nice.  Thanks Mom! 

And while I was gone, they brought my chair back.  I haven't said ONEWORD about it.  But it just showed back up.  That was so nice ... I rocked him to sleep for his nap today in it and he slept very soundly. 

Now on to a couple of house keeping items from Commenters: 
"Mimi" who wrote to Linnea about Trisomy, I don't know a way for her to contact you.  I passed on the comment and she is very grateful and would like to be in touch.  So would you please write me privately at goredan at hotmail dot com. 

Also, Shirley commented about Reglan and the tongue thickening.  He is NOT on it.  Never has been.  But I did ask the docs what could be the cause of the things he's on.  Their best guess is the Flagyl has a metallic taste and he might just be experimenting with his tongue.  I don't think that's it but I'm just keeping an eye on it for now. 

Several people have asked about Dan and the Kids and how they're doing.  They are hanging in there.  Dan is being very domestic!  I just need to make sure not to "untrain" him when I get home! :)  And yes, they've all been exposed.  We're all very careful with universal precautions and such so I think we'll be OK but our guess is he had this while at home for those few days so we were all already exposed.  So far, everyone is OK with no symptoms.  Jacob would be our biggest concern of course with his already weakened kidneys.  It could land him in the hospital.  So we're praying. 

Thanks for the comments and support! 
Love to all, Beth and Manny


  1. Praying you're home for your birthday. Hugs

  2. I learn so much from you and your blog. Thank you. Noah does a tongue thing isnt on reglan but got me thinking he was on stuff for delayed gastric emptying. Your list of things to bring to the hospital, cdiff! OMGsh my MIL had that and we had no idea it was catchy. Thanks for all your knowledge you share. Hope he is feeling better and you get to go home.

    Be blessed