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:
I've been crazy busy. Too busy to think. And certainly too busy to write. But I wanted to let everyone know that we are still alive and kicking. Between Daddy's school, DQ's dance, LP's medical appointments and my own ever-expanding job commitments, I hit the ground running at 6:30 AM and don't stop until well after midnight anymore. I'm exhausted and overcommitted- although admittedly most of these commitments aren't mine- but life is good and I am generally pretty happy. :-)This weekend the family went to Friday night Shabbat service, as we've taken to doing for the past few weeks. We've found a lovely, welcoming synagogue (templebe.org) and a Rabbinical Associate who's willing to work with the Dancing Queen around Little Pom's dialysis schedule. Service *always* starts at 7:30, so this past Friday, we left with plenty of time to eat dinner beforehand. We ate at a Baja Fresh just across the street from the temple and we ate well: chips and salsa, fajitas, mexican rice and beans (well, not for me or LP). We were STUFFED by the time 7:30 rolled around. Well, we booked it across the street and parked. When we got to the synagogue doors, we saw the sign: "Candlelight Service 6:00 in Chapel"We'd missed it. Missed it by a mile! However, there were about 5-6 people coming out the doors who were extraordinarily friendly and so very sorry to hear that we'd come for service. One of them (who later turned out to be the President of the Congregation) said "but you're in luck! You're just in time for Shabbat dinner! Stay here- I'll go pay for you." O.M.G. We were soooooo full. But he took off before we could stop him and that's how we found ourselves eating two dinners in a row on Friday night.The food was amazing. It's too bad that I was already so stuffed I could barely eat. But we all picked at enough of the lovely meal to allow our table-mates to feel confident that we were sharing in their bounty. We did not have to force ourselves to partake in their company though. They were active conversationalists and very, very friendly. I feel blessed that we missed service because it allowed us the opportunity to meet people we might not have at a post-service mingle. We left very full...in a number of ways.
