So…it’s been about 4 months since Eliana’s transplant. You might be wondering “how’s it going?”
I’ve tried a few analogies, but let’s use this one today. It’s like the feeling you get when there’s been a week of steady rain, but suddenly the rain stops, the clouds part, the sun comes out…and a half-hour later you’re covered with mosquitos on a day that’s 95 degrees with 100% humidity. And you’re not sure whether there will end up being a flood or not.
One the one hand, things are very good. The kidney is still working awesomely, and lots of other stuff is coming along nicely. But now we have to work our way through the ever-lengthening “we’ll worry about that after transplant” to-do list. Here’s a taste.
- Eating (Feeding Therapist): As part of this therapy she’s also receiving VitalStim therapy to help train her neck muscles. (I call it electro-shock therapy but I’m not supposed to.)
- Speech (Speech Therapist; Feeding Therapist): She’s still a little indistinct, but has virtually caught up to her age with words, phrases and understanding. A side effect of VitalStim therapy is that kids often get much more vocal afterwards, so it’s helpful to have both.
- Walking (Physical Therapist; Occupational Therapist): Ain’t there yet, and frankly, it’s starting to get a little annoying to have to haul her everywhere. Especially since it’s hard to ignore her clearly enunciated demands for “UP” and “OUTSIDE” over and over again. Dang speech therapy. Turns out there’s a good reason for the difficulty, though. Which leads to…
- Spine/Leg Length (Orthopedist; Orthotist; Physical Therapist): She’s had quite the curve in her spine for a long time, and we finally have an appointment with the orthopedist to take a look. Then one day the physical therapist took a close look at Eliana’s legs and it turns out her right leg is a couple of centimeters shorter than her left one. Funny that – probably explains why she stands on her right toes instead of keeping her foot flat. Looks like she’ll have several sets of braces and lifts for the time being until we see how things shake out.
- (Amusing story here. One of her nephrologists is fanatical about getting an “accurate” length at each visit. He always remeasures after the nurse is done, always gets a different number, and always enters his as correct. Wonder how many times the nurse measured one leg and he measured the other?)
- Infectious disease control (Parents): You think we were tough on visitors before transplant? Wait ’til you see us with an immune-suppressed baby during cold and flu season. Even freakier when you consider things like this recent article about infections in transplant patients.
So…better? Absolutely. But different. Hard to complain when you see scenes like these, though.
I’ve just been informed that this is our one-hundredth blog post.
Amy says I have to acknowledge the milestone, but I couldn’t figure out a way to casually work it into another topic, so here it is. Now we all have to get back to work – even Eliana.
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.