We are officially underway. To having Eliana on the list. Not exactly THE list (as in the list to receive a deceased donor kidney) but the pre-list list that lets us start working towards THE list or a live donor. At some point, anyway, once whatever tests she needs to have done are done, the paperwork is in, and the committee has voted.
So…um, we’ll let you know when we have anything to report.
Hank, Eliana, and I got up early one day last week and trekked over to Hershey for a 7 am transplant class. Why 7 am, you ask? I don’t know, but that’s the only time the class is offered. I guess they figure if you really want a kidney, you’ll show up. Unless you want to stop at McDonalds for breakfast and come in at 8 like the one lady, apparently. Not knowing that was an option, we showed up and spent three hours rehashing most of what we already knew about transplants. Then we met with the doctor.
Have you ever seen the Peter Sellers’ movie The Party? If not, go watch it and then come back and read on. Or, if you want to be all meta, read about it here.
For the record, I’m usually the one flinging chicken across the room into someone’s hair at a fancy party, but in the exam room I sat with a particularly chatty Eliana while the soft-spoken doctor, let’s call him Dr. Bakshi, talked to Hank. Pretty much all I caught of the conversation was that Eliana has no kidneys, so she will need a transplant. Like I said, when we have any news, we’ll let you know. In the meantime, might I also recommend The Great Race, another funny Blake Edwards film.
In an episode of Brain Games, they explain that a cookie dropped on the floor picks up more germs than a lollipop does.
I haven’t seen that episode, but Shira was explaining it to me at the library, having carefully rewrapped her enormous lollipop and stashed it in the car. We were stopping by the library to return some books on our way to the hospital. Yes, the hospital again, less than a month after the nephrectomy. At least we’re getting the hang of it, bringing a memory foam pad for the pullout bed, skipping the cafeteria leftovers on the weekend, lining up help from Eliana’s team (thanks!), splitting our time between hospital and home, between one kid and the other.
Tonight I’m spending the night at the hospital and Hank and Shira are home. Hank and I have been texting, and at the same time I’ve been reading an ebook (My Salinger Year) and eating Raisinets. I dropped one on the floor and asked if Shira thought it was more like a cookie or a lollipop. She said lollipop, but regardless, it went in the trash. The lesson here is, no. 1, technology is great for keeping in contact about such important things as the five-second rule, and no. 2, no matter how many dropped cookies you avoid, sometimes you still get sick.
Eliana’s (theoretical) 3-5 day hospital stay only took 12 days – a bit long, even for her. But we’re here, she’s asleep, and a nurse is on the way.
On the Jewish holy day of Yom Kippur, Jews observe a total fast that goes for about 25 hours. (Though I’d note that my mother literally moves heaven and earth to make the sun set around 4 pm at their house – still haven’t figured out how it’s so localized…)
One of the traditional greetings on Yom Kippur is to wish someone an “easy fast.”
In a clear example of the “two Jews, three opinions” rule there are varied interpretations of just what that means (find a few here, here and here). But the gist of it is that while you should have enough discomfort to recognize that you’re fasting (and why), there’s no reason to be miserable all day. If you plan ahead, anticipate the fast and treat the day with appropriate respect, you can have a meaningful experience rather than just suffering all day.
I was thinking about this saying during the past week. It’s Eliana’s 4th admission in the 10 months or so she’s been home. The first couple of times were pretty uncomfortable. Maybe we didn’t think to pack an overnight bag, or we’d find ourselves in the room with nothing to do or eat. And sleeping in those rooms is a nightmare. But before Admission #3 earlier in the year we decided to just accept the situation for what it is, and plan ahead for Mom and Dad to be as comfortable as one can be in the hospital.
So last Tuesday I got into the hospital parking garage and unloaded our twin memory foam mattress topper, a nice thick pillow, a bag of snacks and drinks, a bag of toys (for Eliana), my tablet, some reading material, copies of her meds and formula recipe, and a few other things I’m probably forgetting. Oh…and a baby. We’ll have more of these stays in our future, so we might as well plan ahead to make it as easy as possible. It’s unfortunate that we have to see that much of the hospital, but once you accept it as part of life it’s easier to take it all in stride. Now each time we can refine our system just a bit more so we can “have an easy stay” for each admission instead of being flat out miserable when we don’t have to be.
Note to self: next time, bring wax earplugs.
The surgery is complete, and things went well, mostly. Nothing ever quite goes according to plan ’round these parts.
The procedure itself was fine – kidneys are gone, little bleeding during surgery, and she has a few more scars to add to her collection. On the downside, it appears that some of her recent coughing fits were actually a symptom of some fluid in the lungs. She’s pretty junky all down in there, so she’ll be spending at least the night in the Pediatric Intensive Care Unit (PICU) while they do some pain management and suck out the lung gunk so she (and we) can breathe a little easier.
So we’ve come full circle, in a way. This time last year was the first of 7 surgeries (so far) during her looong stay in the NICU, and now we’re back in the PICU for another one – visitation restrictions and all. Of course the snazzy new Children’s Hospital it’s much nicer than the NICU…and I’m now meeting folks we know all over the place…but somehow it feels weirdly dejavuish.
Will update as things change, but so far, so good.
For the next stop in our guided tour of end stage renal disease, I draw your attention to the left of the carriage where you’ll see the elusive Bilateral Radical Nephrectomy. That’s Bilateral (both sides) Radical (taking out the whole thing) Nephrectomy (removal of the kidney). Let’s hear it for Latin!
Eliana is going into the hospital this week to have her kidneys removed. The plan is that she’ll be arriving on Tuesday the 12th, with surgery on the 13th. Seems like almost everyone comes up with some of the same questions when they learn about the surgery, so we figured we’d just go ahead and post several questions and answers here so you have an idea of what’s going on.
A: Yeah, but you get used to it. Seriously.
Q: But what will she do without kidneys?
A: Thing is, her kidneys don’t work anyway, so for all practical purposes there will be very little change to her daily routine. She will still be on dialysis for 12 hours a day, and will still get all sorts of shots and dietary supplements to take care of everything that’s not happening in the organs today.
In fact, it’s possible that life with no kidneys will be slightly better. There’s really no good way to directly measure the actual functioning of the kidneys; all of that gets measured by looking at levels of various things in her blood. So it’s possible that her existing kidneys are doing a little bit here or there on a sporadic basis. Removing them will ensure that there’s truly nothing going on and might even make things a little more predictable. Long story short, this is a good thing, and it’s been part of the plan all along.
Q: So is she getting a transplant too?
A: Nope. This is all about taking the kidneys out – not putting one back in. A transplant is somewhere down the line, maybe 6-12 months or so. The doctors will let us know when they think she’s ready.
Q: But what’s so important that they need to be taken out before the transplant?
A: Eliana has a rare condition called Denys-Drash Syndrome, which is a very rare hiccup in the WT1 gene. Did we mention it’s rare? This defect creates an extremely high likelihood – right around a 100% chance – that she’ll start growing things called Wilms Tumors on her kidneys (that’s where “WT” comes from). The kidneys are coming out now so they’re out before any tumors can start forming. Things get REALLY complicated if that happens, and all other things being equal we’ve had it UP TO HERE with complications.
Q: So if she’s not getting a transplant, what’s going into the spots where her kidneys are now?
A: Nothing. Nada. Zip. Zero. Bupkus. I must admit that this one had me flummoxed, as I’d somehow envisioned the kidneys as a ‘flow through’ organ where all the blood in the body goes in the top and comes out the bottom (or something like that). With that mental picture I was envisioning that something would have to fill the gap so the vessels could all connect back up. But really, the kidneys are on renal veins/arteries that branch off from a main vein and artery (the inferior vena cava and descending aorta, if you must know), so they can pretty much just take out the kidneys, tie off those branches, and the blood keeps going up and down in the main vessels. For her transplant, they will actually put the new kidney in her abdominal area and attach it to different vessels…but that’s a Q&A for some other time.
A: Uh-huh. See above.
Q: How long will she be in the hospital?
A: Doctors estimate anywhere from 3-5 days, if all goes well. A lot will depend on how quickly they can get her back on dialysis and renormalize all her levels – the fewer complications and the better she feels, the faster we can get her back to her routine.
Q: Is there anything I can do?
A: We’ll let you know if there’s anything we need locally, but most of all we’d love to have any positive thoughts you might send our way. Every little bit helps. We’ll be sure to update after the surgery.