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.

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.

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.

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.

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.

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.

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.