May 22, 2010

The homecoming

(One last picture from the hospital ... I love the expression on his face ... one of shock! LOL)

We are thrilled to be home ... but the reality is ... it's not easy.  I know we'll adjust to the new "norm" in no time but yesterday was a challenge.

Got home about 1pm.  Three of the kids were home sick from school so Dan was working from home.  He's done an amazing job of taking care of them (along with my mom) so no negative reflection on him ... but there were a lot of things I had to do to catch up on when we got home.  I'm not an obsessive compulsive cleaner or neat freak ... but I nurses were coming to my home and I didn't want them calling in a neglect report based on the dirty house! LOL :)

The 3 sickies wanted to be held and kissed.  Afterall, I haven't seen them in a week.  But they were sick and I was afraid to get their germs lest I pass it on to Manny and we end up back in the hospital.  And I'd been at the hospital and didn't want to pass anything along to them.  So it was sad I could just smile at them.  (Until we all showered and then I did some major lovin'.)

2 nurses showed up.  One to deliver his overnight oxygen concentrator.  The other is home health nurse.  The  hospital wanted us to be an established client in case we will need help down the line.  For now, they're like an "ask a nurse" but on a child they have seen and have all the medical records for.  I can call them if I need to get hold of a medical professional ASAP. 

Then I got to cleaning our bedroom.  Manny sleeps in our room in his crib/cradle.  The docs all suggested his room be as sterile as possible, a sanctuary of sorts.  I couldn't do that yet.  But I could at least change the sheets, sweep the floor and establish it a "no kid and no cat" room.  I think I might have to hire a cleaning person ... don't really have the money for it.  But since I can't use the chemicals to deep clean ... might have to do it. 

Our dear friend Ann showed up with dinner and an ear.  I also took that opportunity to quickly take a shower and get a good hair washing!  Amazing how renewed you can feel once you are truly clean. 

By the time we got all the kids to bed, equipment set up and baby all set (with meds, oxygen, feedings, nebulizer, etc.) it was 11pm!  We had a few glitches and finally got them resolved.

We all slept soundly.  Baby slept until 10am. 

My brain is full of questions.  Mostly about how to do daily life. 

Everything has changed.  Everything.  The simplest things.  I know I'll eventually get my head around the "new normal" but for now ... I'm overwhelmed.  I'm not longer overwhelmed by the diagnosis or prognosis.  (More about that another time.)  But just about how to go from here.  

So until I figure that out ... one step at a time.  One breath at a time. 


  1. I would imagine you still have all the old responsibilities, but you have to figure out a new way to do many of them....... I'm praying for you, Beth.