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.
I searched the web the other day looking for ideas for keeping your tube-feeding child safe while feeding–and by safe I mean not pulling out the tube, not pulling apart the tubing and making a mess, and not making mommy crazy by getting into trouble while feeding. Instead of helpful tricks other parents used to keep their kids entertained and keep the tubes out of the way, I found pictures of perfect little toddlers happily playing while the tube sits untouched and stories of super moms who do it all, raise dozens of kids, and tote their tube-feeding children everywhere.
I was patting myself on the back for getting out for a walk with Eliana one day last week when it hit 40 degrees. The next day I was totally off–misread the nursing schedule and then forgot that Eliana’s physical therapist was coming. So I look a little frazzled. Oh, well, I never claimed to be a super mom.
(Remember Scrubs, Zach Braff’s hilarious medical sit-com and its killer theme song?)
Nope, I’m no super mom–and I don’t want to be. I have read two blogs recently by moms who call themselves super moms. And they are, either because they’re raising special needs kids, home schooling, working full time, or whatever else makes them unique. In this house, we’re happy when everyone’s fed and clothed at the end of the day. Super is too much to ask for.
After Shira was born, I went back to work part time. It was hard to find child care on a part-time schedule and wasn’t very financially feasible, but we made it work. I was able to keep working part time as she got older and plan my work hours around her school day and activities. That worked pretty well.
It’s a different story with Eliana, and even though she qualifies for private duty nursing, I was struggling to find the time to work even 20 hours a week. Now I’ve decided to stop working and cut back on nursing because I’m not a super mom, just a regular mom with some extra jobs to do.
(Stay tuned: Hank promises to follow up with a rebuttal.)
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.