We were finally allowed in Eliana’s room a little after 5:00 yesterday. Then…the tornado of doctors, nurses, respiratory therapists and various other professionals. I’d sit down long enough to take a breath, only to have three people pop in to jot down six test results or monitor reading and then tweak some things. It’s exactly what we’d been warned to expect, but draining nonetheless.
If one were to just listen to the doctors discussing all the test results and trying to figure them out you’d think she was in bad shape. But after a 20 minute conversation about all her oddities they’ll turn and say “she’s doing great – no changes for now.” Or “these test results don’t make sense, but this other one is what we really care about and it’s GREAT.”
Much like the stock market, you can make yourself crazy if you try to track every single item every minute of every day. A lot of stuff is just noise, and life is better when you can figure out ho to block out the noise and focus on the important stuff. In this case, if the doctors make a change it’s probably worth paying attention, but if they don’t take action based on some test result I can probably choose to not worry about it either.
Which brings me to what you’re really wondering. She’s doing pretty well overall.
Long story short, her test results show the kidney is doing a great job of filtering out creatinine – a primary measurement of kidney function. Normal is somewhere under .5 (five-tenths but on dialysis she was regularly as high as 6-8 (no decimal point). By this morning, 18 hours after surgery, she was down within the normal range. Yippee! Still lots of other adjustments to be made, but the big stuff seems to be working great for now.
There’s a saying that “It’s better to be pissed off than pissed on.”
Today, this is not true. After speaking with the surgeon, the waiting room secretary called out to us: “We have pee!” Never in our family has a wet diaper been so eagerly anticipated.
Still have some time until we can see her, but they’re closing up and we’ll speak with the surgeon shortly.
Next step..throw out everything we’ve learned about dialysis and all her meds and start over from scratch. Yippee!
Now that we’re On Our Way, the only next logical question is “are we there yet?”
Huh? Huh? Huh? Huh? Are we there yet? I’m getting hungry! Daaaaaaaad, she’s touching me! Make him stop breathing on me! Are we there yet? Are we there yet? Huh? Huh? Huh?
But on this road trip there’s hardly any of that, ’cause it turns out we’re here already.
Getting Eliana active on the transplant list seemed to take forever, but it’s taken less than a week to secure a kidney. They called yesterday morning to let us know there were two available kidneys and that she was #3 on the list. Called later in the day to say she was continuing in a backup spot but there was still a chance.
Then at about 4:15 am the phone rang with instructions for us to show up by about 6 am to start the process. A few of hours of testing and paperwork, and she was off to the OR by 9:30. Now the fun part…waiting for the 4-6 (or more) hours it’s going to take for the surgery and initial recovery. (Made a bit easier by a nice little concert by Steven Courtney and Lisa Lewis – they must have gotten the music memo.) If all goes well we’ll be with her in the PICU by dinnertime, then hanging out here at Hershey for the next couple of weeks as things even out.
Here we go! Wish us luck…and stay on your side of the seat, would ya?
Growing up, when we Lerner kids would head to Vineland, NJ for a visit we’d have to sing at least a couple verses of “We’re on our way, OH we’re on our way, on our way to Grandma’s farm!” (If you’re not familiar, listen here, but substitute “Grandma” – and imagine 3-4 kids under 12 singing it…along with Matilda, for those who knew her.)
But it wasn’t just a placeholder nursery rhyme for us – we’d usually be visiting Grandma Gussie (Great Grandma, technically, but that doesn’t fit the melody) and she actually owned a farm with a barn and growing things and animals and everything. Even an attached country store where kids would be dispatched to get a can of tuna to make lunch – weirdly enough, one of my most vivid memories of the farm.
But I digress.
I’m reminded of the song today as we can announce that Eliana is, finally, active on the list for a possible deceased donor kidney. Word came in at the end of last week, and we’re just on pins and needles now. Could be tomorrow (literally), could be a week, could be months…but we are definitely On Our Way.
All together now…”We’re on our way, OH we’re on our way, on our way to possibly receiving a deceased donor kidney!…”
Last weekend Amy, Eliana and I went to see a program by Rabbi Charles Sherman, author of the book “The Broken and the Whole.”
Rabbi Sherman’s 4-year-old son, Eyal, went from a rambunctious youngster to having a brain stem tumor to a vegetative coma to a quadriplegic within the course of a year or two. Eyal is now 33, and though he’s spent 25+ years wheelchair-bound and unable to speak he’s also graduated high school and college (B.A. in Fine Arts from Syracuse). It’s an amazing story.
Much of Eyal’s extraordinary progress has been possible because of the Shermans’ optimism and focus, and the immense work they all put into helping him live his life. One comment from the program that wasn’t in the book (I don’t think) stuck with me. To paraphrase: Families of children with special needs work every day to make the extraordinary into the ordinary.
There’s no truer expression of that idea than the simple fact that we were able to attend the event with Eliana. Tubes tucked away, feeding pump running discreetly — to someone who didn’t know her complex medical history she might have looked like just some cute kid with a bit of a drooling problem. Our lives are far from “normal” (whatever that is), but for those two hours we made it all look positively ordinary.
Which brings me to another extraordinary thing I’m going to try to make seem ordinary.
Wanna donate a kidney?
– – – – – – – – – – – –
The doctors have spoken, and Eliana is now eligible for a transplant.
Some statistics: As of September 4, 2014, in the United States 101,170 people needed a kidney transplant, and on average, nearly 3,000 people are added to the list each month. Twelve people die every day awaiting a transplant.
There are two ways we can proceed – a deceased donor (“The List“) or a living donor. Simply put, a kidney from a living donor is better; they tend to work better, last longer, and require fewer anti-rejection medications than deceased donor transplants.
In 2013 there were 5,733 transplants from living donors and 11,163 from deceased donors. Hershey Medical Center transplanted 18 kidneys from living donors last year. The majority of living donors are relatives, but many unrelated donors donate to friends or community members, and some even to complete strangers.
I can’t donate because of some of my health issues and medications. Amy’s going through the testing and may be a good match, but … sheesh … Eliana’s care needs will ramp up for the weeks and months after the surgery, so having Amy out of commission for several weeks at the same time might just push us over the edge.
So…would you consider donating a kidney?
Anyone over age 18 can become a living donor. Testing requires blood tests, urine tests, and a full day physical evaluation, which can be done through Hershey Medical Center (they may be able to arrange for some or all of it do be done elsewhere if you’re not from the area). Even if you’re not a good match for Eliana you could consider Paired Donation, in which your kidney is matched to another recipient with an unmatched donor whose kidney is then given to Eliana.
Let’s be honest: even thinking about a commitment like this isn’t easy. Though the procedure isn’t uncommon, there’s always a medical risk with any surgery. With a recovery time of 4-8 weeks donors will miss some work (and possibly income) and will have to rearrange their own lives for awhile. Most medical costs are paid by the recipient’s insurance, and other costs (like missed work or certain incidental expenses) can sometimes be partially reimbursed in other ways, but there’s often at least some financial impact to the donor.
These sorts of conversations aren’t easy. It’s hard to ask (yes…even for me…) and even harder to be asked. The good news is that through the power of modern technology we don’t actually have to have that awkward face-to-face conversation – though of course Amy & I always willing to chat and answer questions if you want.
Do your online research, and if you’re so moved call Hershey Medical Center to ask about the next steps. Tell ‘em Eliana sent you. (Seriously…they need to know that part.) Bottom line: if there are some possible donors in the pipeline in the next few weeks we’ll hold off and see what happens. If not, we’ll move forward with the next steps and see where it leads us. No expectations, no obligations, no uncomfortable mumbling or odd non-sequiturs on the phone or in the hall.
So please take some time to consider donation. It’s an extraordinary gift that would allow Eliana a chance at an ordinary life.
When Eliana was in the NICU and her health was declining, we had a meeting with all of her care providers to discuss dialysis. I remember going into the meeting thinking This is parenting? Sitting around a conference table with a dozen or so medical professionals and deciding whether your baby should go on dialysis? Afterward, we talked with the rabbi as we were making the decision to try dialysis, and when I mentioned how surreal the meeting was he asked, “Well, is it parenting?”
“No!” I said at the time. But now I’ve changed my mind; I think it is. There are some crappy things you have to do as a special needs parent, not least of which is make life or death decisions for your child. But then, there are some crappy things we all need to do.
Some other moms of kidney kids and I were discussing transplant and whether to donate to your child, solicit a live donor, or go on the deceased donor list. There are pros and cons for each. Here are some things to consider: The donor has about a 6-week recovery period, during which time the donor can’t lift anything (or anyone) over 10 pounds. Eliana weighs close to 30 and cannot crawl, pull herself up, stand, or walk yet, so if I donate a kidney, I won’t be able to carry her for 6 weeks.
Often a parent donates a kidney because we share half our genes, and that’s what our doctors encourage.* But children get priority on the deceased donor list, meaning they tend not to wait as long as adults on the list. Because transplanted kidneys usually don’t last a lifetime, some of the parents I know were told to save their own kidney for when their child is older and would wait longer for a deceased donor kidney.
Again, that voice in my head asks Is this parenting? But I have an answer prepared: Yes, it’s what parents do. They hope for the best for their child, even if that’s transplant surgery, followed by a lifetime of immunosuppressant drugs, and maybe needing another kidney at age 20 or 30. Parents have faith in their child’s future no matter what.
*I am going through the workup to see if I am a good match, but Hank is not eligible to donate because of medications he takes for psoriatic arthritis. If you feel called to donate or would like to know more about the process, contact Hank or me or call Hershey Medical Center’s transplant department at 1-800-525-5395 and ask to speak with the Living Donor Coordinator.
Last week Amy published “Mom in Scrubs,” which said “I’m not a super mom” over and over again. She basically dared me to write a response, so here it is. I apologize in advance for those of you who may have delicate sensibilities.
Our lives by the numbers, in no particular order:
- 18 month old baby
- 6 week early delivery (by very emergency C-section)
- 2 days old for heart catheterization procedure
- 250 diagnosed cases (maximum – ever) of Eliana’s genetic condition
- 4 weeks old when dialysis started
- 14 week NICU stay
- 12 (or so) emergency room visits (we’ve lost count) – including 2 caused by careless home nursing errors
- 7 surgeries
- 4 cases of peritonitis
- 1 memory foam mattress topper for hospital stays
- 12 (or so) medicines per day at her max
- 1 nasty case of sepsis
- 4 wings of the Hershey Medical Center Children’s hospital (out of 4) that we have stayed in at least once
- 30 (give or take 10) home nurses who have worked here at least once
- 12 hours of dialysis, 7 nights a week
- 9 weeks in a row with virtually no weekend night nurses to start the year
- 15 year average half-life for a deceased donor kidney (closer to 25 years for a well-matched live donor)
- 0 days in Eliana’s life where she has not taken some sort of heart or kidney-related medication
- 0 days in Eliana’s life where she will not have to take some sort of heart or kidney-related medication (absent some huge scientific breakthrough that has yet to be made)
And that’s just what I can remember off the top of my head.
So when Amy writes “I am not a super mom” I can think of only one appropriate response:
And we all know it.