Feels Like the First Time

As the parents of a child with special needs, one gets used to a specialty version of “normal” – both for you and for your child.  Among other things, this means that all sorts of childhood milestones take on a life of their own.

When Shira was born we got a cutesy novelty photo frame that said “Baby’s First Bath” around the edges.  We dutifully took a picture of her first bath in the kiddie bathtub we set across the kitchen sink and put it in the frame.  Eliana, on the other hand, has never actually had a bath.  Up until transplant time the tubes in her abdomen had to be protected against infection risks, so that meant no dipping into that swirling morass of germs we lovingly call bath water.  And really, washcloth wipedowns while laying on a towel just aren’t the same.

But post-transplant, once we get final approval that her newest abdominal scar has healed sufficiently, we might actually be able to put her in a bathtub with water and everything!  So what if she’ll be two…Baby’s First Bath will just be a touch later than usual.  But in the meantime, we can at least practice with a soak-free bath-like experience.

New Rules to Live By

Now that Eliana has a working kidney, we want to make sure she keeps it and it stays healthy. The risk of rejection is greatest in the first six months after transplant, and the risk of infection is greatest during this time too because of the higher doses of antirejection medication. For three months, Eliana has to wear a mask out in public to limit her exposure to germs. (I know, good luck getting her to keep a mask on her face.) At home, we’ll just wash our hands like usual to try to limit infections.

We’d love visitors, by the way–especially since we won’t be going out much at first except to doctor’s appointments–as long as you’re healthy. If you’re sick or think you might be coming down with something, please don’t come over until you are better. Eliana has twice a week bloodwork initially and an appointment with the transplant team once a week. She’ll still be followed by nephrology (the kidney team) as well, and her pediatric cardiologist and pediatrician. She still gets therapies and has home nursing. A couple big goals for her down the road are eating and drinking by mouth and standing, walking, and chasing after Shira.

Some other oddball things you might be curious about now that she’s had a transplant: Sunscreen is super important. Some medication Eliana is taking makes her more likely to develop certain skin cancers, and some medication makes her more likely to burn. Oh, the irony.

No remodeling or farming for Eliana. Because she is more prone to fungal infections, she has to stay away from dirt and mold.

Certain foods are off limits, including grapefuit, pomegrante, pomelos, and Earl Grey tea. (She’ll have to stick with Dad’s favorite, English Breakfast, for her tea parties.) She may have other dietary restrictions down the road when she starts eating more and different foods, depending on her electrolyte levels. People with kidney disease get pretty clever when it comes to modifying recipes and finding creative ways to eat more protein or less potassium.

Eliana will always have kidney disease, by the way. A transplant is a treatment for kidney failure, not a cure. But what a treatment. Hallelujah!

Let’s Get This Potty Started!

Sheeeeeeee’s comin’ out!

Eliana’s coming home with a NEW (to her) FREAKIN’ KIDNEY!  Time to celebrate!

Just not for too long.  Things are better, but it’s still going to be a ton of work, and we’re almost starting over from scratch to develop a whole new routine for her new situation.  We’ve worked our butts off for the last two years or so to get to this point, and there is quite literally a lifetime of work ahead to keep it going (more on that in the coming days).

Sorry if that’s a bummer.  It’s not cynicism or pessimism – it’s just the facts.

But at some point this weekend, just to keep a tiny bit of our sanity, we’ll take the time for a few moments of WAHOO!  Maybe when we walk out of the hospital, maybe when we put the first pee-filled diaper in the diaper pail, or maybe just as we’re dozing off knowing that all four of us are going to fall asleep in our own beds for the first time in weeks.

So in Eliana’s honor, we ask you all to take time for your own WAHOO! moments this weekend.  Do something nice, hug someone, revel in nature – whatever – and reflect on what it took to get you there.

I Got 99 Problems and a Hip Ain’t One

Oh wait…yes it is.

In our second consecutive Lunchtime Lyrics post (thanks Jay-Z, but no link for this one – might be kids listening!), we update you on a medical issue NOT involving Eliana.

My parents (Bonnie & Lewis / Bubbe & Grandpa) were supposed to leave for a 7-week motorhome trip to the Grand Canyon yesterday.  There was a trip, but unfortunately it involved Bubbe tripping over the bottom step of the motorhome and breaking her left hip.  Not a great day.

So…she’s been in the hospital since yesterday evening and scheduled for surgery late this afternoon.  Seems like a fairly “easy” one (assuming nothing wacky shows up once they get all up in there), and the expectation is that she’ll be headed home for rest, recovery and rehab as early as Friday or Saturday.  Of course she has her phone, tablet and Internet access, so if you know how to reach her knock yourself out.  Not literally, of course – no reason to create MORE injuries.

She specifically asked me to not post a picture, so obviously…

Not nearly as cute as Eliana, but gotta do what ya’ can with what ya’ got.

Oh, and by the way, things still looking good for Eliana.  She’s off all the painkillers and everything today, so assuming nothing crazy happens we’ll get her reacquainted with Home sometime tomorrow.

Waiting is the Hardest Part

The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part

Thank you, Tom Petty.

———–

OK…so…Eliana moved out of Intensive Care (PICU) to Intermediate Care over the weekend, then got downgraded another step to “floor” status and moved again on Monday evening.  So far, so good.  Test results look reasonably good, and she doesn’t have to wear all the freakin’ sensors at this point.

The only thing attached to her is the central line for her Fentanyl (pain killer), and that’s pretty much the main thing that’s keeping her in the hospital right now. They’ve been weaning her off the Fentanyl for most of the past two weeks – first pretty quickly, but now in slow steps over the past 5 days or so. Withdrawal is nothing to mess with, and we certainly don’t want to deal with that at home, but it’s hard to stand it when this is the only thing left.  But if things stay on schedule and the Fentanyl taper works, it’s possible she could be home for the weekend.

Yay!

So for now we wait…and hope that nothing pops up to make them want to keep her longer.

Of course now that Eliana is feeling better we can do fun and cute stuff with her again, so here are a few pics from the last couple days for your viewing pleasure.

Tongue Check!  Shira and Eliana making sure they can still catch flies.

 

Tummy Time. Pretty impressive considering that she has a scar from sternum to pelvis.

 

And…

 

Eliana’s new Pee Shirt (delivered Tuesday; thanks Bubbe & Grandpa.)

Light at the end of the tunnel

Many a cynic has said that when you see the light at the end of the tunnel it might just be the headlamp of an oncoming train.  I’ve said it myself a few times…and on occasion I’ve probably been the train.

But today I was neither the cynic nor the train.  And it felt good.

Eliana wasn’t even a month old when we had to make a decision about whether to start her on dialysis.  It was hard, and we had lots of questions. Our nephrologists put us in touch with another family who had a child on dialysis, and they were gracious enough to share their time and experiences with us.  Then after Eliana’s diagnosis a group called Parent-to-Parent found another family whose child had the same rare condition.

It was maybe a couple of hours out of our lives, but so important.  It’s one thing to hear from the doctors, but it’s another thing completely to hear from parents who had walked the path we were considering.  If their families had done it and succeeded, maybe we could too.

Not two minutes after I arrived in the room tonight our nephrologist walked in and said (paraphrasing slightly): “We have a family downstairs that’s trying to decide whether to start their child on dialysis, and I was hoping you’d be willing to talk with them and let them meet Eliana so they can see there really can be a light at the end of the tunnel.”

So I did.  And it felt good – for so many reasons.

Catch ya’ on the rebound

Our child is absolutely ridiculous.

She spent 11 days on a ventilator, heavily (and I mean HEAVILY) sedated.  You’d think it would take her a few days to rebound and be anything close to her regular self.

This picture was taken maybe 30 hours after the tube was removed, and just a couple of hours after an abdominal CT scan involving particularly gross dye that caused her serious intestinal distress.  Oh…and she’s literally tied down to the bed.

Yet here she is, looking and acting genuinely happy.

Ridiculous, no?  There’s a lesson in here somewhere, but I’m far too tired to try to find it.