Home again, Home again…

October 27, 2013 at 10:19 PM 4 comments

She’s home.

Holy CRAP!

SHE’S HOME!

AAAAAAAAACK!

If Hurricane Birth was traumatic, Hurricane Arrival was just mind-numbingly freaky!  (Yes, I know the hurricane names are in reverse alphabetical order. Just deal with it.)  (And I also know I’m overusing the exclamation points…and parentheticals…but I JUST DON’T CARE!!)))

The release itself was moderately straightforward.  We knew there’d be lots of paperwork, last minute exams and the like, so we were prepared for most of it.  Then there were the hugs and well-wishes from the nurses, copies of pictures a bunch of them had taken with Eliana over the prior days, and the actual packing up of her stuff and walking down the hall for the last time.  A poignant moment, if I do say so myself.  Though it was made much more fun by the fact that we decided to go whole hog on the Disney gag.

Home

But that was counterbalanced by the practical “what are we getting ourselves into” moments.  Like the fact that it’s hard to staff home nursing shifts near the end of a month so we’ll have a shift or two uncovered during the week.  Or walking to the hospital pharmacy with Shira and coming back with a grocery sack full of 14 prescriptions, all of which are given on slightly different schedules.

Arrival on Friday afternoon was about an hour later than we’d hoped, but within the margin of error we’d expected.  Though it meant we walked in the door at exactly the moment Eliana expected her bottle.  So we did what any parents would do when coming home for the first time with a medically complex child and being greeted at the door by three nurses.  We (politely but firmly) pushed past them and heated up a bottle.

Boo-ya!

We acclimated to having a nurse planted in the home surprisingly quickly – so far at least – and it’s been great to have the extra assistance.  It’s also comforting to realize just how much we really do know, like occasionally fixing or explaining an item in the paperwork, or correctly administering certain medications ourselves.  Which is good, since it only took until Sunday morning to have our first shift cancellation. We were already on our own from 7 am – 1 pm, but the 1-8 nurse was sick and couldn’t come in, which meant we were uncovered from 7 am through 11 pm.  Didn’t really get done many of the family things we’d planned, but we did…re-tape an NJ tube, disconnect from dialysis and feeding machines, correctly administer all medications – on time, replace a dialysis catheter dressing, recognize a peeling BROVIAC dressing and call for assistance (different company for that, with different dressing protocols), maintain the charts, hook up to dialysis and feeding machines, and still manage to eat 3 meals apiece.  Oh…and write about it all.

Most importantly, we managed to get outside for a walk around the block and introduce Eliana to a few neighbors.

Took a walk. Just the four of us.

Yup…four of us.

Best walk I’ve ever taken.

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Entry filed under: Uncategorized.

Title Unnecessary Testing…Testing…

4 Comments Add your own

  • 1. Mel B. H.  |  October 28, 2013 at 1:16 PM

    Hi – I read your Kveller post and had to reach out. My daughter Daphne is 4 years old. She was a preemie (27w) who was born with a congenital heart defect. She was in the NICU for 5 months, had heart surgery at 6 months. The death of her identical twin sister caused her kidney disease. We were “lucky” that Daphne had enough kidney function to live without dialysis, and we were able to do a preemptive transplant this past March. My husband Zev was the donor. Daphne is doing amazingly well. My Daphne blog http://www.catchupdaphne.com is private, but you are welcome to request access. Anyway. I just wanted to say hi, congratulations on bringing Eliana home, and offer my good wishes as a parent of a child on the other side of transplant.

    Reply
  • 2. Susan Nathan  |  October 30, 2013 at 7:59 PM

    I didn’t know this blog existed until today, but so glad I found it and how wonderful to hear what’s been going on with all of you! My thoughts and prayers are with you as you take this journey with Eliana! Sending love and lots of mazal your way!

    Reply
  • […] 14 week NICU stay […]

    Reply
  • […] back when Eliana first came home we left the hospital with a bag of 14 medications.  Over time we added some and deleted some, […]

    Reply

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