Today, my nine year old son had his seventh surgery. Seven surgeries seems like a lot to squeeze into nine years…but they feel like even more when I stop to consider the fact that they all happened over the span of just twelve months. Last year, on June 26th, my son (nicknamed “Little Pom” after his mothers affinity for all things Pomegranate) was admitted to Childrens Hospital of Michigan and diagnosed as being in End-Stage Renal Failure. At the time of his admission, he had 10% kidney function; and was totally asymptomatic. Thus began our journey into the world of providing constant care for a critically ill child, a “kidney kid.” We learned how to perform dialysis nightly at home. We learned how to care for a catheter- first through a foley catheter, then a supra-pubic catheter. Eventually our family graduated to the miraculous Mitrofinoff, which allows him to feed a catheter tube into an opening created in his belly button to drain his bladder…a process which he will have to do 4-8 times a day for the rest of his life. We learned how to give painful injections once a week- just one of the 20+ medication doses we would dispense each day. We learned what to feed him and what could kill him. We learned that he desperately needed a kidney transplant.
Over the past 12 months, I have held by child as he cried himself to sleep, despairing over the painful medical procedures, the mockery of his catheter by classmates, the diet and activity restrictions. I cannot count the number of times I have heard my only child whisper to me “I wish I’d never been born.” Throughout this period, my husband and I have comforted him with the reassurance that Daddy was going through the process of being approved to be a living organ donor. Getting a new kidney became my little boy’s panacea- the hope of which gave him comforting knowledge of a world without so many restrictions, mean comments, painful days. We rejoiced together when it was determined that my husband was a tissue match for Little Pom. This brought us so very close to the hoped-for day when dialysis would end and something resembling a normal life would once again be possible. On Monday of last week, we found out that the transplant team would most likely not allow my husband to move forward as the donor. His blood pressure was a bit high and they wanted someone who had a stable b.p…not a “controlled” one. That was the first blow, although he's waiting for the doctors to tell him if they'll allow him to be re-tested at a later date. On Tuesday of last week, I lost my job. This week, Little Pom had surgery number seven, moving him one step closer to being ready to receive a donor organ he so desperately needs.
Not everything in our life is tragedy however. Make-A-Wish is sending Little Pom and our family on his dream trip at the end of this month- a week on the Nickelodeon Cruise ship. Next week, he’ll get to go to sleep away camp for the first time, at a site run by the National Kidney Foundation and staffed by his very own doctors and nurses. My little guy has been so touched by the outpouring of love and support these two organizations have shown him that he came up with the idea of doing a lemonade stand to raise money for the NKF, so that they can fund research that might one day provide a cure for the condition that caused the damage to his kidneys and to raise awareness of the need for organ donors, by offering his customers the chance to sign a donor card right there and then. I am so proud of his willingness to engage in his little act of Tikkun Olam, reaching out to the community through his lemonade stand and taking a proactive step to support his own eventual cure. Even in the midst of fear and stress, pain and poverty, our family is richly blessed.
We have been taught that to save one life is to save the world. Organ donation, both as a living donor (through the sharing of a kidney, blood or bone marrow) and later, when we no longer need our organs, is the greatest gift that anyone could possibly give to someone else. There are hundreds of thousands of families like mine, children like Little Pom, who desperately need a donor. Many of those critically ill family members will die before a donor organ becomes available. Please, if you have not yet taken the time to do so, register yourself as an organ donor. You can do so online at www.organdonor.gov or the next time you renew your drivers license. Be sure you speak to your family about your decision, so that they are aware of your wishes. This is especially true if you’ve signed a donor card, but never formally placed yourself on the donor registry. If you do not formalize your decision, your family has the authority to override your decision to donate if ever you were unable to communicate your wishes. Finally, please consider becoming a living donor. Giving blood is easy. Bone marrow is almost as simple; you can add yourself to the bone marrow registry and they will match you up with someone who desperately needs the gift of life. Finally, while it seems a bit overwhelming, consider becoming a living kidney donor. Everyone is carrying around the potential to save a life before the end of their own. It takes a hero to follow through on that potential.As he continues to sell lemonade to raise money for the National Kidney Foundation, I take comfort in the knowledge that Divinity has a plan for our lives and that no child suffers in vain. Perhaps, his little bit of activism will become the start of something great, something that results in a cure for Little Pom and children like him. They tell us today that once someone is diagnosed as being in End-Stage Renal Failure, they are always considered to be such, even after transplant. This is why Little Pom will never be able to fulfill his dream of following his Iraq Veteran Daddy’s footsteps and serving in the military. Thankfully, I'm really, really grateful that I will never have to send him to fight some far off war, they way I have sent his Daddy time & time again. However, I am absolutely confident that the life he leads now is also NOT his future. I believe that we will find a cure for Hinman's Syndrome in our lifetime. I believe that there will come a day when medicines, injections, catheters and worry are NOT a part of his daily life. That future starts with research. And research starts with people being willing to support the NKF. Thanks for taking the time to read this. If you’d like to learn more about Little Pom, his medical condition, or how to be an organ donor, feel free to visit our website www.kidneykid.com.
Yes, it's true, I've been gone for TWO months...but when you see what we've been up to, you'll understand. LP finally had the Mitrofinoff catheter that I first wrote about here last summer put in a few weeks ago. His recovery was slow and hard- the surgery itself took over 9 hours- but he's so very happy with the result. While it looks scary (mostly because it's not entirely healed up yet) he compares it to putting in or taking out an earring and vastly prefers it to the old foley (up his penis) or suprapubic (through the abdominal wall) catheters. I've posted a slideshow below that show's the stoma they created in his belly button and a step-by-step photo diary of LP demonstrating how it works. It might not be for the faint of heart, so be warned. But for those who've followed his progress over the years, this is an important milestone and I encourage you to follow this link:http://www.slide.com/r/wComklw_lz-UDex9XG0RVUdidzEt6HIX?previous_view=mscd_embedded_url&view=originalOn another bright note: we should know by the end of this week if Daddy is a viable living kidney donor! YAY!!
Health News Girl ‘Fantastic’ After 6 Organs
Removed(March 10) — Heather McNamara, 7, will
be discharged from a New York hospital
today after a daring, high-risk operation
last month in which doctors removed six
vital organs so they could take out a
baseball-sized tumor that had invaded her
abdomen and threatened her life.The marathon Feb. 6 operation lasted 23
hours. It was the first of its kind in a child
and the second in the world, said the lead
surgeon, Tomoaki Kato. In effect, the
young cancer patient was both the donor
and recipient of her own organs.“She’s doing fantastic,” her father, Joseph
McNamara, of Islip Terrace, Long Island,
said Monday as the two played Old Maid
in her room at New York-Presbyterian
Morgan Stanley Children’s Hospital,
noting that she spent from 10:30 a.m. to
noon in the hospital’s school for pediatric
patients.Kato’s team removed and chilled the
child’s stomach, pancreas, spleen, liver
and small and large intestines as they
would for transplantation, so they could
be restored after the tumor was taken out.
“This was a very high-risk procedure,”
Kato said. “It was a big responsibility. I
was very nervous.”The transplant specialist said the cancer
had spread so widely that the girl’s
stomach, pancreas and spleen couldn’t
be saved. In place of her stomach, Kato’s
team fashioned a pouch from intestinal
tissue to hold food before it moves into
the small intestine for digestion. The loss
of her pancreas turned the child into a
diabetic who will need insulin injections
and digestive enzymes. Without a spleen,
she’ll face a heightened risk of infection.
She can eat ordinary food, supplemented
for now by a pump worn in a school-style
backpack.Kato said the surgery was so risky that
the girl’s father, 46, was prepped to be a
live organ donor in case surgeons
couldn’t salvage his daughter’s liver.
Kareem Abu-Elmagd, a University of
Pittsburgh transplant surgeon, said: “It
was a gamble. I admire Kato for having
the courage to do this.”Kato said the gamble took a toll on him,
too.“Afterwards, I was about to collapse,” he
said. “I slept for five or six hours on a
couch.”Last year, at the University of Miami, Kato
carried out the first such operation, on a
62-year-old South Florida woman, whom
he said is doing well.For her part, Heather said she’s feeling
fine and can’t wait to get home. She’s
missing her sister, Stephanie, 10, and a
Pomeranian named Angel.“I love to play with my dog,” she said.
First of all, I want to say that I think generally speaking you're doing a really good job. THANK YOU so much for lifting the restrictions on stem cell research. This technology has the potential to change my son's life and your willingness to rile up the pro-life movement (although, they are generally anti-my son's life) is commendable. Thanks to your courage, maybe someday my little guy won't have to pee through a hole in his abdomen. I also think it's wonderful that you've lifted the global gag rule. Not only have you taken a stand in favor of curing my son's illness; you've stood firmly in favor of women's lives and that is not (sadly) an easy choice in these polarized times. That said...Speaking of women's lives: I've heard you want to negotiate with the "moderate Taliban leaders." WTF!?!? WHO, pray tell, are the moderate Taliban? The ones who only beat women for wearing shoes that make noise, rather than killing them outright? I like you a lot. But this CANNOT happen. To negotiate with the Taliban would be a betrayal of everything you stand for: for democracy, anti-terrorism, female equality, all of it. The Taliban are not and never have been "moderate." Please, don't lend them credibility by giving them a seat at the table. I voted for change and to a large degree you've delivered. Don't take away from women in Afghanistan what you're giving back to women here. If you are a Feminist president (which you have said you are) then you need to advocate for the rights of ALL women. That means continuing to stand up against oppression and misogyny wherever it is found...whether it's the board room of National Right to Life or the streets of Kabul.As Abigail Adams said to her husband John: "Please, remember the ladies."
Health News 12 Patients Swap Kidneys at 3 Hospitals(Feb. 19) - Doctors at three hospitals announced they have successfully completed the first six-way, 12-patient kidney transplant involving multiple centers — a feat that could dramatically increase the number of kidney transplants done each year.“We have performed a six-way domino procedure at our hospital before. But this is the first time we have done something this ambitious on such a grand scale involving two other hospitals,” said Dr. Robert Montgomery, chief transplant surgeon at The Johns Hopkins Hospital in Baltimore.
“This will serve as a blueprint for national match in which kidneys will be transported around the country resulting in an estimated 1,500 additional transplants each year,” he said.
The Feb. 14 procedure involved six donors, six organ recipients, and surgical teams at John Hopkins, Barnes-Jewish Hospital in St. Louis and Integris Baptist Medical Center in Oklahoma City. In all, nearly 100 medical professionals took part.
The procedure, known as kidney-paired donation or “domino swap,” takes a group of incompatible donor-recipient pairs and matches them with other pairs in need of a kidney that will match. By exchanging kidneys among the pairs, each recipient gets a suitable kidney.
All six donors, one man and five women, and six organ recipients, four men and two women, were in good condition, doctors said. As part of the complicated trade-off, Johns Hopkins flew one kidney to Integris Baptist, Integris Baptist flew one kidney to Barnes-Jewish and Barnes-Jewish flew one kidney to Johns Hopkins.(Source: http://news.aol.com/health/article/kidney-domino-swap/351857)
So, today was clinic. Don't panic- apparently all's quiet on the kidney front. But, Daddy asked the Nephrologist for a referal for a 2nd opinion before we do the Mitrofanoff catheter in April. Neprho said that he'll schedual a meeting with him, the Urologist and our family so that we can feel comfortable before we move forward. He also said that he didn't think that the Mitro would interfere with Little Pom's dialysis. I am terrified. This is a HUGE decision and LP has to be ready to catheterize himself consistantly every two hours or else there could be complications. LP is not a fan of doing ANYTHING every two hours. So, basically, I'm dealing with:- Fear of permanantly altering my childs anatomy.- Fear that once we do, we/he won't be able to be as rigorous as we need to be.- Fear that once we do, LP will still end up on hemo somehow.- Fear of the unknown.- Fear...in general, you know?But the simple fact is: no mitro, no transplant. I feel backed into a corner, undereducated, underprepared, unsupported. And I don't know what to do about any of these feelings. My research has turned up very little. Our urology team doesn't have time for us and tends to be rather brusque with us when they do. And there is no "kids with caths" support group, or play group, or e-list or anything. I think I would feel sooooo much better if only we could meet another family with a kid LP's age who has a mitro and is thriving. I think I'd feel better if I knew that this wouldn't have to be a forever kinda thing. In the meantime, we have to buy two of these for Little Pom: http://www.epill.com/pediatric.html10-Second Pity Party Coming Up:It's HARD being a parent!
Well, we've had a busy couple of days! On Thursday, Little Pom had urology clinic. This is also known as our quarterly 15 minutes with the urologist. We got some news that last fall would've made me very happy- they want to move forward with his Mitrofanoff. Three months of bladder training using the supra-pubic and there's been no progress, so, we move onward. Honestly, I was really shocked at how hard this hit me. After all, in November I'd been angry that they were making us wait before we did it. I felt as if they were unnecessarily delaying LP's progress towards transplant eligibilty. Now, after three months of hoping that maybe this whole procedure could be avoided, it was back...and I was shocked. I guess I hadn't realized just how hopeful I'd been until they yanked the rug out from under me. To be fair, this is a good thing (I guess). After all, by mitigating Hinmans Syndrome, we move forward towards a kidney transplant. But, as I've discussed before, the Mitrofanoff is a really *big* surgery. Not in terms of the actual surgery- the urologist wants to do it using the super-duper-bestest-most-technologically-advanced lathroscopic robot available. Which is pretty cool. But still....we're re-arranging organs here! We're doing something that will result in my baby peeing through his belly button for the rest of his life. This is B.I.G. big. We do not enter into this lightly. This is one of those times when the full weight of parenthood settles on your shoulders and you wish there was someone bigger, more qualified, more competent than you are to make the hard decisions for you. But there's not.One of our biggest concerns is the fact that once they do the Mitro, there's a chance it could interfere with Little Pom's PD (peritoneal dialysis) and he could end up on hemodialysis. This is bad. Not only is it harder on his body (involving multiple needle pokes and faster, less frequent cleaning) but it would pull him out of school for 4 hours, 3 days a week. I'd basically have to quit my job and manage his care full time. He would have to receive homebound services...something I've been trying to get for him (to no avail) for months now. Everything would be harder, scarier and more trying than they already are. I don't want that. And, if for some reason Daddy doesn't work out as a donor, this would become the status quo for months, if not years. So, we're going to ask if it's possible to put off getting the Mitro until we've got a confirmed tissue match. He's doing well on the PD and we don't feel a need to rush into anything. It's just a matter of whether or not the transplant coordinator and his care team (Nephrology and Urology) will let us delay it. It's quite possible that the transplant people won't more forward until he has the Mitro in place. In which case, it becomes a crap shoot- get the mitro and hope to goodness that it doesn't interefere with the PD. Needless to say, this has been a tiny bit stressful for us. We ended up needing to go to the super-duper-ultra-cool-robot hospital for pre-surgical stuff on Friday. That was good, because it meant that I had to take a day off of work and frankly, I was such a scared, stressed zombie (such a pretty picture, huh?) that I would've been useless anyway. Ugh.So, comment time: what would YOU do if you were in our situation? I really need some feedback. I've found some e-lists and support groups for parents of kids with kidney disease, but I'm just so overwhelmed. In order to encourage your feedback, I will pre-reward you with pics of Little Pom:Here he is after taking 3rd place in his first ever Cub Scouts Pinewood Derby:
And here he is showing that even after a 0-16 season, he'll always been the Lions #1 fan:
