The New Year is Not The Biggest Transition

It is hard to imagine anything more fundamental to ones sense of self than ones appearance. Issues of race and gender aside, our notions of who we are is inextricably entwined with our notions about the flesh that contains us.
It should be no surprise, then, that Leo is mourning ~and a bit shocked by~ the gradual loss of his beautiful bronze skin. And so am I, just a little bit.

The doctors here can not fathom why he would not want to be rid of one of the most visible symptoms of his liver disease. Lost on them is the fact that, in addition to being a shocking transition that he had not anticipated, it is a loss of something fundamental to who he was, and to how he had always thought of himself.

His color was uniquely his own, and for the most part, for much of his life, it was beautiful. He and I spent so much time out doors, often for long stretches in the high country of Oregon's wilderness and that much closer to the sun, that his slightly jaundice skin took on a brilliant and striking shade of bronze. With his lovely flaxen hair tumbling down his dark shoulders, he looked the very picture of "mother nature's son". People complimented him on the gorgeous tone of his skin, even envied it, and to Leo this seemed only right and proper.

Who is he, then, without his mane of gold and skin of bronze? I, of course, would love him every bit as much if he were bald and green. But for him almost too much to bare, on top of everything else. On top of being separated from his community, friends and pets, on top of the isolation of life in the hospital, on top of accepting a stranger's liver in his body and the massive scar that came with it ~on top of everything~ he is having to come to terms with a radically new identity, and along with it, a strange and unfamiliar body that neither looks nor feels like anything he has ever known

It is going to be an interesting year, many changes yet to come.

Mad Woman of the Ward

After striving to be the epitome of grace and serenity for low these past 2 months, after having nurses tell me I am the coolest mom they have ever met, the Charge Nurse "threaten" to hire me, and a doctor tell me it is a pleasure to watch me with Leo; I hit the wall. Although the docs are treating us with a tad more deference, I suspect I now have a bit of a reputation.

Hospitals are not empowering places, and, with their litany of policies and arbitrary rules, they are no place for a couple of Bohemian-radical-nonconformist-pagan outlaws like Leo and I. And making the litany of policies and arbitrary rules even more maddening is the fact that every hospital employee we encounter seems to interpret them differently, so nothing is consistent. Then there are all the crazy-making issues that crop up: one doc told me, in the hours after Leo's surgery, to plan to be released from the hospital by weeks end; other docs have said to expect to be here for month.
We have had 5 rooms over the past 6 weeks, and where, early on, the accommodations struck me as similar to monastic cells, it now strikes me as more akin to a prison cell, or perhaps the Hotel California. We are both SO ready to go home.

The quandary is, Leo has a long road to recovery ahead of him, and yet hospitals are not proper places to recover one's health, and yet in this culture it is bloody difficult to find the better alternatives that doubtless exist.

In a sense, the fact that our insurance company has already made clear that they will not pay for follow up care is freeing: it releases up into the great wide open of possible healing paths. Once Leo is fit to travel, he and I will head home, into the arms of our community of support, to his naturopaths and other healers who can shepherd him on his way back to health.

Strange Saternaillia in the ICU

What can one say about spending the holidays in the ICU? Perhaps the best description is that it is like spending the holidays in a foreign country, the customs are strangely similar, and yet in no way the same.

The surreal circumstances were complicated by a maverick doc who decided to give Leo Ursodil a common liver medication, despite the fact that Leo's violently painful reaction to this medication is listed in his chart, and he wears a bracelet warning against administering this drug. The doc figured he knew better. He didn't. So Leo spent Christmas Eve, and the wee hours of Christmas, in indescribable pain.

Because he has a brand of courage I have never encountered in anyone else, he managed to have a pretty good, if unusual, Christmas. Several family members altered their own holiday plans to visit, and Leo recieved an unprecidented number of fabulous gifts; but none so precious as my gift: the boy himself.

Cycles of Season, Memory and Recovery

Yup, thats Leo, putting on a very brave face after being rousted outta the hospital bed and into a chair. And, yes: that arcing line just above the sheet is his incision, reaching from one side to the other.



Leo woke up this morning observing that it had seemed like an extremely long night; I reminded him that it had been the Solstice, the longest night of the year, and that everything would get lighter and brighter from here. Of course, in addition to it being the beginning of longer, brighter days, it is also the beginning of the long, hard work of recovery.

Not surprisingly, everything hurts at this point: any movement, and every inch from head to toe. Guess theres no way around that where major surgery is involved. He finds himself in one of those ironic cycles in which he hurts, in large measure, because he's not been moving: the more he doesn't move the more it hurts to move so the more he doesn't move. The only cure: moving through the pain, a relative constant in life.

Another irony, the doctors want him to get stronger, and yet dont yet want him eating solid foods (they have some good reasons for this). The answer: organic broths and juices! I am wishing I had my champion juicer here, but at least I have an organic, worker owned co-op up the street.


Although our insurance company reluctantly agreed to pay for the surgery, they have made clear that they will not pay for his follow up care here, once he has been discharged. Transplant patients require years of careful and diligent care, and even then it is a dicey road. I will not accept anything less than the best available care for my son, and so, with Leo daily making great strides, I am amassing a "hope chest" (as apposed to a 'war chest') to cover his future medical expenses, expected to be hundreds of thousands of dollars by the time all is said and done.

Meanwhile, home is feeling very far away indeed. I had occasion to call my bank today, and in verifying my identity they asked for my home address: for a moment I couldn't even remember it, and then, as I recited it, I got both the house number and zip code wrong. Granted, I am operating on sevier sleep deprivation, but still . . .
There is a condition called as ICU Psychosis, which is know to efflict patients, I think maybe I have it. I keep clicking my ruby slippers, but so far nothing

A Solstice Gift

Well, I dont even know how to describe the past 24 hours, but all that really matters is that Leo received his new liver last night and is doing better than anyone could have expected! It is truly the best Solstice gift ever!

There is very little the doctors can tell me at this point about the donor, other than they were an exceptionally healthy adult, who was also able to donate a surprisingly large number of other organs (it is rare to have someone be so all around healthy that all of their organs can be used, but this was the case in this instance). I am told that the liver was extraordinarily healthy, far better than they normally ever hope for, and the all night surgery went off without a hitch!

It hurts my heart to think of a vibrant, healthy person's life cut short, it feels like an awesome responsibility, but also a blessing, to carry that vitality forward in my son's life. This one individual saved dozens of lives last night. And tonight I am holding the intention that their family is comforted in knowing that in that one death, so many lives carry on.

Meanwhile, Leo and I have a long road ahead of us, there is always the risk of rejection or other complications, and although the cost of the surgery was covered, our insurance rep has made clear that Keiser will not cover follow up care at Children's (they want us to go with OSHU) That is their prerogative, just as staying with Children's is ours. The incompetent care Leo got while at OSHU on an emergency basis, and the fact that they do testing on animals, are far from the only reasons we will never, ever go there again; but they are reason enough. So there will be further fundraising to do as Leo makes his recovery. I hope to be able to bring Leo home in time for his birthday (March 5th), after which we will make monthly trips to Seattle.

In the mean time, Leo is doing GREAT, and all signs are he will be up and around soon. We could not have made this amazing journey without each and every one of you, thank you all so, so much

love
Kyr and Leo

False Alarm

We had our first False alarm: a possible donor, and night of hope and anticipation ending in . . . nothing.
I don't know why it didn't pan our, some times organs are damaged in transit, or final tests reveal incompatibilities; sometimes another person on the waiting list has a change of circumstances that moves them ahead on the list. We will never know, and so the wait begins again. I was not prepared for the wave of grief that would over take me, at this loss of something we never actually had.

Leo is awake!

After being under sedation and on a ventilator for a full week, Leo is now breathing on his own and slowly coming down off all the drugs.

We had a flurry of visitors over the weekend, including Leo’s grand parents, dad and dad’s grown kids. He was still under sedation for most of the visits, but it was clear that all the extra love and attention gave Leo a real boost!

The cause of this most recent hospitalization was due to an infection in his PICC line (a sort of all purpose IV line), he is recovering nicely, and it is lovely to have his pissy little self back, but none of the treatments of the past week have addressed the underlying issue: the kid needs a new liver. And so we wait.

Leo in ICU

So, we have insurance at long last. I will be worshiping at Shanarama's feet for the rest of my life for this, but really, how bad a thing is that ? ;)

So the basic, direct medical expenses, including the surgery will be covered: YAY!!!

Leo was briefly released to Ronald McDonald House, Saturday evening, but had to come back before the first Hanukkah candle was lit due to an infection in one of his IV lines (yup, he still had 'lines' outta the hospital)

He is on a ventilator, heavily sedated, and hooked up to just about every machine in the ICU. The docs say he is making a good recovery from the infection, and his condition seems to have stabilized. What he really needs is a new liver.

Visitors, laptops, and cell phones are severely restricted in the ICU , so I will be largely out of touch for a bit. I have this crazy dream of being able to at least visit Portland (it is so weird to think about visiting my home) by New Years, but really, theres no way to know. This is proving to be a very effective series of lessons in living in the now.

I am so very grateful to all of you, and in awe of the love and support that have been showered on Leo and I

peace
Kyr & Leo

I don’t know what I did, in this or any life, to earn such an amazing community of support. The Boy and I have been going back and forth between Seattle and Portland so much, I had begun to loose my sense of which end of the journey was home, and which end the visit. Things like this make very clear where both my home and heart are

Happy Thanksgiving

It is a blessing to be
It is a blessing to be here
It is a blessing to be here now
It is a blessing to be here now together

There is a beautiful African man working here at Seattle Children’s who tells me that “Leo” (he pronounces it “lay-o”) is also a name where he comes from, in his language it means “today” or “this day”. Here in the now. So significant in so many ways.

And so, in this season of thanks, we are grateful, Leo and I, for this day; each day. And we are grateful to be here together, cradled in a circle of love that is wider and deeper than we might ever have known if not for this crisis.

Leo and I will be staying in Seattle at least through the end of the month, and just in time there is ‘room at the Inn’ (Ronald McDonald House) Although I find it wildly ironic that he and I would be staying at, well, McDonald’s (or any place associated with it) I am so thankful to have this lovely room with two beds and big windows looking out into the embrace of trees and sky. With luck, Leo will be able to make the shift here over the weekend, in the mean time it is a welcome retreat for me in between proceedures and hanging with Leo.

So, we are here now, and we are not alone, and we are so grateful for all of you.

love
Kyr & Leo

My Son, the Super Hero!

I have long thought of my son, Leo, as “The Boy Who Lived”.
Literally from the time he was born (breach, with the cord around his neck, and no medical intervention) he has been dodging bullets and surviving close shaves. James Bond has nothing on my boy!

Just a few weeks after he was born, Leo was diagnosed with Alagille Syndrome[1], a genetic disease that effects an array of systems in the body, primarily the liver. As a result, he cannot digest fats and has trouble assimilating fat-soluble vitamins, leaving him perpetually on the precipice of malnutrition.

Despite all this, and a round of hospitalizations as an infant, his health steadily improved, and for over a decade he has led an active life that included exploring Oregon’s wilderness, rock climbing, earning a blue belt in Taekwon Do, and enthusiastically participating in Portland’s bike culture. His irrepressible charm and good health lulled all of us into the belief that he was invincible, and would never need the only known “treatment” for Alagilles: a liver transplant.

This year, however, his health began deteriorating; in a matter of months he went from cycling the Springwater Corridor with other members of SHIFT, to being unable to walk to the bathroom unaided. Leo’s naturopaths were determined to find the best possible care for him, and after researching all the options, referred him to Seattle Children’s Hospital. So it was that Leo and I began making regular trips between Portland and Seattle this Spring, and initially the specialists in Seattle were optimistic about the possibility of treating Leo without a transplant.

The quality of care at Seattle Children’s is vastly superior to anything available in Oregon, and Leo and I really enjoy riding the train up and back, and our bikes around Seattle. Our adventures, as well as the state of the art care, were always more than worth the trip. The only problem was the cost of treatment, by summer we had wracked up several thousand dollars in medical expenses. The only thing that saved us was the hospital’s willingness to accept manageable payment. Meanwhile, the disease was progressing at an agressive rate. October found him severely weakened and, as we would later learn, severally malnourished. He had no appetite, and his body could not assimilate what little we was able to take in. When we arrived for a November 14th appointment in Seattle Leo was so ill he needed to be immediately admitted to the hospital, with all indications pointing to liver failure. He and I have been here at the hospital ever since.

So now we are facing the possibility of needing to pay for a liver transplant, as well as the cost of his current hospitalization and previous treatments.

Leo is beloved by all who encounter him, and has an amazing community working on his behalf: friends and co-workers have worked diligently to find insurance options, and are organizing an array of innovative fundraising events; Seattle Children’s Hospital is working tirelessly to get the Oregon Health Plan to cover his care, and in the mean time are providing state-of-the-art care with little regard for our ability to pay. The one thing they cant do is put him on the transplant list, not until we either come up with insurance to cover the surgery, or come up with about $300,000 dollars. That is apparently the value of a human life, in this instance anyway, and those who have it get to live.

Will our hero able to beat the odds yet again, stay tuned . . .

[1] http://en.wikipedia.org/wiki/Alagille_syndrome or
http://www.emedicine.com/ped/topic60.htm