Wednesday, October 31, 2007

Tummy Time Victor

Along with the growth spurt is additional strength and energy. Bo has rolled over from front to back last week, and from back to front this week! Although he remains skeptical of the Tummy Time Added Value assertion, he is getting pretty good at it.

Tuesday, October 30, 2007

We can't wait to come home!


While we have had many adventures and a seriously amazing turn of events here, we can't wait to come home.
Chinatown still has my favorite Chinese Bakery, and Bo has discovered pigeons here. He is SO into the outdoors!

The Secret Garden



The secret garden was full of butterflies last time we took Bo there. He loves nature and being outdoors. He just gets all relaxed and zoned out. Or if we are walking under trees, he will gaze up and settle down, even on a fussy day.

We are getting discharged today!

Monday, October 29, 2007

Back in the Joint: better safe than sorry




Just what we wanted, a weekend in Boston. We have a huge room, and a view of the Boston skyline. Unfortunately, it's because Bo spiked a fever Friday (101.8F) that sent us to the emergency room just as the Red Sox were going to Denver (a good thing, considering the proximity of the hospital to Fenway Park). So far, his cultures have been negative, and his central catheter is still in the right place, so the docs think he just had a virus (or teething?). We'll get sprung tomorrow, we hope, and get to spend the rest of the week packing for our trip home.


This is me and Boo Boo at the beach a mere 100 yards from our temporary house. And a picture of him in his Luke Sky Walker outfit without his hand in his face.

Tuesday, October 23, 2007

Needs a Bath!


Shiny head needs a bath. This is from 2 weeks ago. When we left he was in the 1% for length, he is now in the 25%!

Saturday, October 20, 2007

It's the Journey, Stupid

Our fancy doctor at the fancy University of Michigan "we're ranked 12 in US News and World Report" Hospital refused to adopt the protocol to administer Omegaven to Bo. She said that if U of M couldn't get it, then no other hospital in Michigan would be able to get it. This is patently untrue. She also said that it would be too much paperwork for her to do to get it, and that we were legally prevented from paying for it, the U of M hospitals wouldn't pay for it, and she certainly wasn't going to pay for it. This is in contrast to the docs at Children's Hospital, Boston, who put in their own money to start a Foundation to pay for the Omegaven for kids whose insurance wouldn't pay. If she's so against saving Bo's life, why would she bother to be a pediatric GI specialist? What kind of medical practice is this?

I am seriously considering moving to New England for the superior medical care. Actually, Bronson provides care on par with Boston, but they are such a small community hosptial that they do not have a pediatric GI specialist on staff.

Thursday, October 18, 2007

Odysseus, the Jokester

Bo has gained over a pound an more than 2 inches since we arrived in New England. He is more often in high spirits and laughs a lot, "talks" a lot, and is busy catching up and surpassing his 4 month milestones. He literally has a new lease on life.

For me, it has been a true vacation. A permanent one. I was given a vacation from the conventional knowledge's prognosis for Bo. We are no longer waiting for him to die, as the University of Michigan physicians would have us believe. They suggested a consultation with the Palliative Care "we're sending you home to die" Team before our discharge in July. Now we can even dare to plan for Bo's life, for a long-term plan. We got a vacation from a terminal diagnosis and are basking in the sun of managing a chronic illness. It is like a miracle. It is a miracle. It is more than I could hope for. More than I dared to dream of.

I told Dr. Puder, his magician at Children's Hospital of Boston, that I would have to do something big for him to commemorate Bo's high school graduation. Maybe a Seabrook beach house for his team. Or a tenured chair at Harvard. Or at the very least, contributions to the Foundation that supports all the kids on Omegaven whose insurance won't pay.

Wednesday, October 17, 2007

Planning a Triumphant Return Home


Like Odysseus, the return home after many adventures brings you back to a familiar, but unknown place; a place of conflict, confusion, celebration and discovery. We plan to be home by the first weekend in November.

Tuesday, October 16, 2007

The Road to Mecca


We heard about Omegaven from our friend, the archivist. Librarians are trained to find information fast, and he did just that. When we were at our darkest hour, not knowing if Bo would live to his 100 day birthday, not possessing the emotional bandwidth to do more than sleep, eat and sit in the hospital by the baby's crib, our friend found this therapy for us and pointed us to the road. Once Bo's bilirubin started rising, we started planning our trip.


And we have been blessed. A friend of the family donated their beach house to us for as long as we need it (only an hour up the expressway from Boston). Michigan Children's Special Healthcare (a secondary insurance backed by the state for special needs children) agreed to pay for my air fare. Dr. Puder (who started saving babies with this therapy) encouraged us to come see him sooner, rather than later. And his administrative assistant, Liz, my Blue Cross Blue Shield caseworker, Cathy, and my Michigan Children's Special Healthcare caseworker, Chris, all supported my as we navigated the logistics around this trip. My brother-in-law drove with my husband and all our stuff, while his partner accompanied me and Bo on the plane trip. My sister donated the miles so Jennie could help us travel. Our friends (our chosen family) at home are watching our cats and mail and house. As well as taking us to the airport, coming by to hold the baby while I made all my preparatory calls and emails, and bringing by gifts for Bo and treats for us.
Oh, and prayers. I used to be totally secular. But many friends and family have offered to pray for us, and it has humbled me. I feel that Bo is so loved and blessed. He is truly a lucky pig.

Monday, October 15, 2007

Happy 100 days!




The 100 day birthday is one of the most important birthday's a person has in their life. In the old days, due to high rates of infant mortality, this was a big deal. Today, because we didn't know if Bo would even live this long, it is also a big deal. Here we are with my parents. Notice the pigs on the cake. Bo was born in the year of the boar (pig), but not just any pig, but GOLDEN pig. Very auspicious.

Friday, October 12, 2007

Let me tell you...


Light therapy also helps to break down bilirubin. Here's Bo sitting in the sun in nothing but his underpants. Of course, I have a whole series of digital pictures from this day. So many that when you slideshow through them, it's like stop-motion video. I won't bore you with uploading all of them, though I really wanted to.

Thursday, October 11, 2007

Old Yeller- September 4th


Bo seems to be feeling better. His GI doc here in Michigan dropped his fats to almost a dangerously low level, but it's all for the greater good. Her theory seems to be correct, since his skin is less yellow and he has plenty of energy to yell about it. Although his bilirubin is still way high, it is less than it was.


Here he is telling is Daddy what for.

Saturday, October 6, 2007

Jaundice- already



We knew that Bo's IV feedings could lead to liver injury, we just weren't expecting it to happen so soon. We had been home a little more than a month, when his liver started to get hurt. You can see the jaundice in his skin and the whites of his eyes. Our visiting nurse said that she had some kids whose livers were so injured that they cried yellow tears. Thankfully Bo's liver has not been that badly injured. These pix were from mid-August (I'm trying to catch us up to present day, and I don't have that many pix from August with me).
Because of this, we accelerated our temporary move to Boston, where we were hoping to get an alternate lipid (sourced from fish instead of plants). The theory (contrary to popular belief) is that it is the plant-based lipids that cause the liver damage. But before we could see for ourselves, we had to duke it out with a) our insurance, b) Bo's secondary insurance (Michigan Children's Special Healthcare), and c) Bo's GI specialist. There were phone calls, faxes, visits, clinic appointments, emails and more phone calls. Meanwhile, Bo's liver is slowly disintegrating, and he is turning a brighter shade of yellow and the whites of his eyes are turning dull and green (at the corners).

Thursday, October 4, 2007

Home at last


We brought baby Bo home for the first time in his life, July 9, 2007. Not only are we first-time parents, but our son has very high-tech special needs. So we were faced with late-night diaper changes, in addition to the terror of changing the dressing to his IV line ourselves (weekly). Luckily we got a stellar visiting nurse who came every day for a week, and weekly thereafter.
An explanation of Microvillous Inclusion Disease (MID). The finger-like protrusions that are microvilli are supposed to be on the surface of the intestines to give surface area for absorbing nutrients from food you have digested. His microvilli are apparently in these bubbles, or inclusions, imbedded in the tissue instead of on its surface. His biopsy looks a lot like the one on the right. Since it is so rare, there really isn't any conventional wisdom or body of knowledge around it, or the patients who have it. The belief is that none of their microvilli are in the right place and that these kids cannot absorb anything. But why does oral tylenol elixir work for Bo, then? There's no real explanation from his doc. The oldest living kids in the US are in their early 20's. They are even rarer than Bo!

At the Hive of Evil, aka Mott Children's Hospital


Jose and I were beside ourselves, wondering if he would make it to the next month or first birthday? The docs who diagnosed him told us that we had to seriously consider a small bowel transplant and probably a multivisceral transplant because the IV nutrition usually damages the liver excessively. And if his liver didn't explode in the first year of life, then he'd probably succumb to a line infection. The first MID patient they diagnosed went into liver failure by 4 months of age.

He's almost 5 weeks old here.

Wednesday, October 3, 2007

Tinier at 2 weeks than at birth


After 3 nerve-wracking weeks in the NICU at our local hospital and another 2 at the large university across the state, they ruled out all the more common causes of watery, explosive diarrhea that had contributed to his almost 25% loss of his birth weight, and determined that Bo had MID. There are something like 60 known cases in the entire US and less than 200 in all of the EU.

Tuesday, October 2, 2007

Welcome, Bo!


Jose and I welcomed our son, Bo Tseun Bernabe Verlarde-Chan, into the world on Sunday, June 3, 2007, weighing in at 6 lbs 13 oz. and 20 inches long. GUIDE TO HIS NAME:"Bo Tsuen" is of Chinese origin. The transliteration is of the Cantonese pronunciation. Bo means "treasure or treasured", and Tsuen is a word for "big river" and is his generational name. Bernabe is from the Bolivian side of the family.




He was born with a very rare and life-limiting condition that took 5 weeks and two hospitals to identify: microvillous inclusion disease. Basically, his small intestines cannot absorb the amount of nutrients he needs to live, although they do create all the enzymes needed to break down food. The microvilli, or finger-like protrusions that give the intestines all their surface area are not where they belong on the surface of the intestines, but are stuck in these bubbles (or inclusions) imbedded in the tissue instead. We were told that these children often do not make it to their third birthday, but that it wasn't a death-sentence (huh?).