Waaay back when Eliana first came home we left the hospital with a bag of 14 medications. Over time we added some and deleted some, slowly whittling down to “only” something like 6-8 a day by transplant time. Each day a medicine disappeared was a good day.
After transplant we had a mere 12 regular meds to deal with (plus various other things to give as needed). Child’s play, really.
Two of them are anti-rejection medications that she’ll be taking for…let’s see…the rest of her life (give or take). A major purpose of those drugs is suppress her immune system to reduce the chances of rejection. Of course that INcreases the chance that she’ll catch a little somethin’ somethin’ of an infection if given the opportunity.
So to counterbalance these drugs, she was sent home with an antibacterial medicine, an antiviral medicine and an antifungal (eeeewwww!) medicine. The first two are dosed by syringe once a day, but for the antifungal (Nystatin, if you must know) we had to jam one of those little foam-tipped applicators into her mouth and swish it around 4 times a day. Not fun for any kid, let alone one with oral issues. Oh…and it stains, if you’re wondering what those marks are on your sheets Ms. Drooly Face.
But as of today the Nystatin has been officially removed from her regimen, making today a very good day.
Not as good as THIS day, mind you, but pretty close.
It’s been just about a month since our last post (and Eliana’s birthday!) – which means we’ve started to get the occasional “um…everything ok?” from folks who read the blog.
Answer: Yup, things are doing just great. So good that a person might want to give a big ol’ whoop-whoop in celebration.
This past year was quite a journey: 308 days on dialysis, about 3,696 hours connected to the peritoneal dialysis machine, 100 therapy sessions, 40 doctors appointments, 23 days in the hospital after transplant.
And now her new life begins: 1 gracious person who chose to donate her organs, 57 days so far with no dialysis, 5 days playing on the swing set, 2 band concerts, and many more joys on the way. Happy 2nd birthday, Eliana!
For the past 5-6 years we’ve bought a CSA (Community Supported Agriculture) share each summer. Our choice for the past three years has been Strites’ Orchard – in large part because we get lots of fruits as part of the share, plus the opportunity to pick extra at a discount or at no charge.
This week Amy, Shira and I went to Strites’ to pick more blueberries and sweet cherries.
Of course the biggest problem with the cherries is pitting them, right? Not wanting to spend money on a one-trick-pony of a cherry pitting tool we looked around for other methods. Some of the options:
A straw? Yeah…as if they made straws that strong any more.
Unfolded paper clip? Took just as long as a knife, but more cherry mangling.
Pastry bag tip? Not bad, but a teeny tiny target and if you push too hard you’ll end up splitting the cherry in half.
As I was trying these methods I had this sneaky feeling that there was something in the house that would be perfect for the job, but I just couldn’t place it. Was it a tool in the basement? Some other gadget we used for something else? It was killing me.
At which point I went upstairs to give Eliana her medication for the night and it hit me – the 60 milliliter catheter tip syringes we use for burping her G-tube would be PERFECT! Seriously. The end is just the right size and doesn’t get wider like pastry tip. Plus it sits upright on the little wings at the top so I don’t have to hunch over to use it. And we have like 50 sitting in the drawer, so one of them would never be missed.
Worked like a champ. (That’s cherry juice, by the way. Only cherries were harmed in the making of this photo.)
So by the end of the day we had fresh blueberry scones, a blueberry/cherry/peach compote (using the remnants of last year’s frozen peach crop) and a couple of pounds of fresh-frozen fruit for later. It was a good day.
Oh…and Eliana’s fine too. Why do you think we’re ALWAYS going to write about her?
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.
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!
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.