Archive for October, 2013

Testing…Testing…

This may just be self-indulgent moping, but I figure I’ve earned one at this point.

Yesterday I had to drive out of town for the day on a work trip (booked before we had a firm date for bringing Eliana home – I’m not THAT nuts).  On the way home, about a half-hour from the house, around 10:30 pm, I blew a tire.

Seriously?

So with all sincerity I can muster in my current state, I’d like to thank my father for forcing me to spend some portion of my childhood standing around pretending to care while he worked on the cars.  ‘Cause after 30 seconds of swearing, another minute or two of irritated muttering, and a few deep breaths, I got out of the car (in my suit, in the wake of tractor trailers going at least 85 mph on Route 81 South) and changed that *$%*$#&* tire.  Yeah I did.

Can’t help but think that there’s someone looking over my shoulder trying to see juuuuust what it will take to push me to the breaking point (was it something I said?).

This wasn’t it.

October 31, 2013 at 9:59 PM 1 comment

Home again, Home again…

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.

October 27, 2013 at 10:19 PM 4 comments

Title Unnecessary

Eliana.

Is.

HOME!

October 25, 2013 at 1:32 PM 1 comment

Flat Family

You may have heard of Flat Stanley, a little boy who was accidentally flattened, and was then able to visit his friends by being mailed in an envelope. (It’s OK – he’s fictional.)  Today we’re announcing the “Flat Family” project.

“What’s that,” you’re wondering? I’m glad you asked…

Eliana’s room is pretty much devoid of decorations.  We took out all the princess decals (darn!) when Shira moved next door to her new room, and Amy won’t let me reuse the other set of 8-year-old decals we bought when Shira was born.  Instead, we’re looking to decorate using photos of friends and family members – Lerners, Dimelers, Fishers, Youtzes – you name ‘em, we want pictures.  And not just current photos either.  If you have a good photo of a long lost relative we’ll take those too (labelled, please).

Let’s face it: between the risks for infection and the need to have Eliana hooked to dialysis and feeding machines 12+ hours a day we probably won’t do a lot of traveling or have any big parties at the house in the near future.  (For example, as much as we want to celebrate her release, we probably don’t want 30 people handling her right out of the hospital at the very beginning of flu season. Sorry.)  So if hanging out with family and friends may not happen as much as we’d like, we figure we can at least get Eliana primed with her Flat Family.  Plus it’ll just be neat, don’t you think?

If you’d like to contribute photos you can mail us hard copies or email digital copies.  Don’t worry about size – we don’t know how many we’ll get or exactly how they’ll be used, so send us what you want and we’ll figure it out.  Decoupage anyone?…

 

October 19, 2013 at 10:22 PM Leave a comment

The Rest is Just Noise

I have to admit, this is starting to feel weird.

When one has a baby, it seems like most of the last minute planning happens before the baby is born.  If nothing else, once the child comes along the parents are just happy to come home and sleep in their own beds, so they’re not thinking about anything other than checking under the hospital bed for Mom’s missing slipper.  If there isn’t any anti-bacterial soap, or someone forgot to wash the crib sheets, those sorts of things it just get fixed somewhere along the way without a second thought.

Now that we’re seriously looking at a likely release date for Eliana it’s clear that to some extent we (or maybe just I?) have been pointedly NOT doing some of this planning over the past couple of months.  Without knowing if Home was a place she’d see, it seemed easier to just not think about it and avoid the possible disappointment from planning that wasn’t implemented.  Besides, if the worst happens, who wants to return a carseat or play yard in these circumstances and be asked “reason for return?”

So the past week or two have been spent trying to pull together the things we need at home.  Y’know…all the typical things a family needs for a new baby.  Like a 6-foot high by 4-foot wide set of wire shelving for dialysis supplies, a 3-tier metal cart for the dialysis machine, a case of hand sanitizer (Purell foaming, like at the hospital, thank you very much!) and a video camera monitor (OK…not technically necessary, but comforting).  And that doesn’t account for the equipment itself (dialysis maching, continuous feeding pump with IV pole) and other supplies (dressings, tape, etc.) supplied by various vendors that are working on transitioning us to home care.  Sheesh.

Nor does it account for the sheer number of people who will be in our home and the planning we need to do with them.  We appear to have been approved for 16 hours a day of home care through about the end of year, but it took a day for Amy and I to figure out what hours we would actually have them in the house.  Much to my surprise, the staffing agency felt that they couldn’t find a nurse to show up and let herself in at 2 am so she’d be here until 10 am.  Who knew?  And it appears that even when we have a full-time nurse from a staffing agency sitting in the room there are certain things she can and can’t do based on her license (an RN can do certain things an LPN cannot do), and there are other things that those nurses can’t do (blood draws and certain dressing changes) because a second agency will be dealing with them.  Sheesh. Even a control freak like me will (probably) just have to give in at some point and let the pros figure it all out.

But Eliana’s getting ready to leave the hospital, and that’s what matters. The rest is just noise.

October 18, 2013 at 11:46 PM Leave a comment

We’re Number (two hundred and fifty) One! We’re Number (two hundred and fifty) One!

Last week we received word about a (pretty) firm official diagnosis for Eliana.  What took so long, you might ask?

Good question.

Kidneys are funny things; sometimes they just shut down for no apparent reason.  In fact, there’s a specific diagnosis – nephrotic syndrome – that pretty much means “your kidneys seem to be malfunctioning and we’re not sure why.”  About 2 months ago, as it became clear that things weren’t getting better, the doctors sent away a bunch of genetic tests just to cover all their bases.  Nobody had any thought that they’d return any positive results since most the tests were just shots in the dark to look for things so rare that they almost never show up.

Except that in this case, they hit a target.

Turns out that Eliana is missing a tiny bit of a gene that controls specific elements of kidney growth and function.  When that gene is missing it leads to…well…crazy-early kidney failure and the need for an eventual transplant.  So the “good” news is that her diagnosis changes virtually nothing about her treatment since she’s already hit kidney failure and was being treated with the assumption that she’s heading towards an eventual transplant.  The only change is that it had previously been unclear whether she’d actually need to have her existing kidneys removed prior to transplant (sometimes they come out, sometimes they don’t). Since this gene may cause other funky things to take place within the kidney, we now know they’ll have to be removed.

And just for fun, this diagnosis doesn’t even account for the heart valve issue – that appears to be an unrelated hiccup that was just along for the ride.

The coolest part about all this – say the parents who are trying to make some lemonade here – is that this particular diagnosis has only been made about 200-250 times.

Ever.

In the world.

Early on we had joked with the doctors that all of her weird medical stuff should at least be mined for a nice journal article so we could contribute a little something back to the medical community.  As Number 251 or so, it’s highly likely that we’ll have some permission forms to sign and that she’ll be published somewhere.  Oh goody. At least it’s a nice change from medical consent forms.

But the most important part of all is that since her treatment regimen isn’t really affected by the diagnosis, things are still moving along swimmingly.  We’re scheduled to do our own medical training next week to learn the ins and outs of dialysis, dressing care, NG tubes and the like, and things still appear to be trending towards a Disney trip around the end of the month (please knock on something wooden RIGHT NOW!).  We’ll see how it goes, but we’re cautiously optimistic at this point and hope to have even more positive news to share in the next couple of weeks.

October 14, 2013 at 10:03 PM 1 comment

A Disney Speedbump

Seriously?  SERIOUSLY? It’s enough to make a person superstitious.

Some of the NICU nurses have superstition that you shouldn’t say a child is going “home” because it might jinx things.  They claim that some of the kids just get so used to the place that they purposefully tank things just to stick around longer.  Instead, some like to say that the kids are “going to Disney” as they’re being prepared for release.  (No word as to whether they’re thinking World or Land, but it probably doesn’t matter).

Yesterday’s good news update referencing a possible release wasn’t written for 12 hours when Amy called from the hospital to say that Eliana’s BROVIAC catheter had slipped out of her blood vessel and had to be replaced. Surgery #5; incisions 9 & 10!  Grrrr….

But she’s an old pro by now, and this one was practically a drive-thru. She was off her IV and feeds from the morning until mid-afternoon surgery and back in her bed by about 6:30. Eeverything looks good and she was back to eating at her normal 7 pm feed time…albeit a wee bit groggily. So 3 weeks ago she had two tubes “permanently” installed in her left chest and abdomen, and now she just has scars on the left and two tubes on the right. Can we be done with that now? Please? Pretty please?  Pretty please with a catheter cap on top?

Good news is that this, by itself, doesn’t stop progress since she really won’t miss any dialysis time.  So Disney, here we come!

October 1, 2013 at 9:47 PM Leave a comment


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