Happy Hannukah and Merry Christmas!

Sitting Up!

Bo's been sitting up against the sofa and practicing without support for about 3 weeks. He can now sit on his own against the sofa for quite a bit without listing over. He's had so much fun with the Chan family this week, that he has been taking these monster morning naps. I'll be curious to see what his napping pattern settles into after they have all gone home.

And, so far, so good. We've had lots of visitors and done lots of visiting and Bo seems to be in the pink after all that pink eye fuss was over. In fact, I think he's starting to gain weight again. He had only gained a pound in the 7 weeks we've been back. I'm sure his weight-gain was stalled by his viral infection, the subsequent dehyration and recovery, as well as the pink eye.

Omegaven's first Christmas in Michigan

By the numbers as inspired by Max's mom and Ellie's dad:
61 - Bo is the 61st baby on Omegaven
3- the number of home infusion companies we've had
4- the number of hospitals Bo had been treated
2- the number of GI specialists Bo has had
1- the number of visiting nurses
1- line infections
4- hospitalizations (including the 1st 5 weeks of his life, for diagnosis)
2- other MID kids we've met
0- other babies on Omegaven in Michigan
5- blood transfusions before Omegaven (0- after)

What Pink Eye?

I feel fine. What are those eye drops for?
I'm hoping that since Bo's had a stomach virus, pink eye and bonus hospitalizations that we've gotten all his winter illnesses out of the way. The eye is much better. It responded almost immediately to the eye drops. Unfortunately, he has to have them 4x/day through Wednesday. At least this is an infection that doesn't require a stay at the Bronson Inn.

Pink Eye?

The never-ending saga of Infectious Baby! We woke up to his right eye swollen shut. He finds ways to give me a new heart attack each day. The terror, the joy, the surprise, the fear. The drama. This is no normal baby. But it is our mission to give him as normal a life as we can.

Like a friend of mine (fighting cancer) said, it is surprising the friends who become indispensible and those who disappear; the acquaintences who become family and the close friends who stop returning your calls. All the heartache? Worth it. See picture.

Our Second Stay at The Bronson Inn

A stomach flu for Bo is a very serious affair, as rehydration requires hospitalization, IV fluids and checking his electrolytes (or "lytes" as the nurses say) once every 8-12 hours. Dehydration means potassium, sodium and chloride (salts) levels dropping, and sometimes dropping to scary low levels. We got to stay at the inn 2 nights this time. The pediatrics floor (aka PEDS, aka Childrens Hospital) is starting to get the idea that we are frequent fliers there. We are hoping that this is not a regularly scheduled visit.

The Scholar

We read 5-6 books every morning. He likes to turn the pages. My parents didn't believe me when I told them this, so on their most recent visit, I woke them at 7AM to see for themselves. I explained that it's like whale-watching. You have to be up early in the morning to see him at his happiest. He is a morning person, for sure.

Thanksgiving at Binnslandia

Sorry for the belated Thanksgiving pic. I usually fill up the memory card before downloading onto my computer, where I then upload to blogger. Bo had great fun at Binnslandia, and Jose and I had a chance to relax and talk to grown-ups (not each other). It's nice to get out once in a while.

We love you, Binnses!

Ah-choo!

Urine sample and lastest labs show no bacterial infection, but white blood cells still bouncing around (higher again). He's been sneezy, but not very boogery. Maybe it's just a weird cold? He's been a lot sleepier lately, too. I hope he kicks it soon. This cold is making him sleepier (and therefore crankier) than usual.

Boo Boo's Bear Suit

He stays warm on his walks with a German footmuff and the bearsuit. Sometimes he gets so relaxed he falls asleep and we let him finish out his nap in the sunroom. He loves his walkies.

UTI, Psych!

Bo and his abuelito (grandfather), pictured to the left. We are waiting for another visit, soon.

Turns out that the UTI thought doesn't explain the numbers. We were sprung from the hoosegow, Friday (sorry for the blog delay, but it always takes me a couple days to shake that creepy no-day/no-night hospital feeling; like Vegas, but a lot less fun and a lot less good food). The only numbers out of whack were the white blood cells (WBC), and without any fever, any indication of inflammation, and the WBC dropping all on its own, our doc DC'd (which means discontinued, for those not in the "know"), the antibiotics. The surmise is an asymptomatic virus was hanging around. Okay with me. Those drugs made Bo nauseated and groggy.

They upped his calorie count in his TPN (IV feeding) and he's already gained almost half a pound! His knees got chubby almost over night. He's been burning way more calories than before, as he's gotten so active: rolling from side to side, practicing sitting up, reaching for and lifting rattles, practicing standing (with help from mommy). As a result, he had lost weight the week before that (I was alarmed).

Mystery Solved: E. coli Urinary Tract Infection

Pictured to the far left, a photo of one of the 100,000+ culprits, and near-left, the action figure. I'm relieved that we aren't being sent home with an unsolved mystery, and even more relieved that it isn't a line infection. The funny thing is, even though he seems to have a lot of bacteria in the wrong place, he still has no fever, and has spent the bulk of the day screeching with laughter. One nurse even asked us if Bo was really sick. Tough kid.

Mystery Lab Results = Hosptial Admission

The good news: Bo's bilirubin continues to drop, evidence that his liver is healing and actually in the normal range. The bad news: his white blood cell count is very high, so we have to get him admitted tonight to start antibiotics and get a blood culture in case he has a line infection (we'll probably be in-patient at least 3 days). The weird news: his CRP level is normal; this number indicates inflammation, and if Bo had an infection, it should be elevated, but currently is not.

This is a picture of our local hospital, it is literally a mile and a half down a hill from our house. And 2 of the 3 pediatric surgeons on staff here trained at Boston Childrens, the rock star hospital that saved Bo's life. So we feel very safe going here. That doesn't change the fact that hospital food is still hospital food, and that we will have to wake Bo up from his night time sleep and invariably keep him up way past his bedtime, after an already long day that did not include a proper late afternoon nap.

Clothes, Supplies and TPN

These onesies (side snap bodysuits) can be had at Walmart for a song and a dance (3 for $8). While in a beach town in New Hampshire, the shopping was quite limited, and so we found ourselves at the big W. This is the only product in the entire superstore that I am in favor of, however it is amazing. Since Bo's line is on his right side, and the shirt does not cross over on the inside, we can draw the line out mid-torso, instead of having to have it come out of a leg hole (by the diaper line) of a regular onesie. With the regular onesies, if he has a blow out over night, the big pool of pee and poo can easily contaminate his line, as the transition points, while threaded, are not hermetically sealed from the environment. The only down side is that they only come in short sleeves, and winter in Michigan gets quite frigid, so now he's in layers.

The top pump is the Curlin 4000, which Critical Care Systems offers. Our friends in Maine, 2 of the 4 oldest living MID affected people in the US, helped to design this. We will get ours next week, and hope it is better than what we have. The next pump is the CADD Prizm. It was provided by our second home infusion company, Apria. This pump is very loud and has a virtually useless alarm system, not to mention an inane user interface. It was obviously designed to be "user friendly" but this just means that you can't control anything on it. The rechargeable battery is as big as the pump itself, hardly convenient, if you ask me. Also, it is attached via a cord, so suddenly you have three pieces of equipment to worry about instead of just two: bag, pump, battery. If you don't want the huge battery pack, then you use a new 9 volt battery every day. Since there is no battery alarm, you have to pitch the battery at the end of the day. What a waste. Also, the tube locking mechanism requires either a key or a penny. So after you've done all these procedures to get vitamins into the TPN bag and attache the tubing to the bag, you go grab a filthy piece of currency, or better, a key that is covered in sticky adhesive because it's taped to the pump (there's no clever attachment other than this).

The last pump pictured is the first we ever used. The Abbott Gemstar is super quiet, has a very sophisticated alarm system, and the tubing locking mechanism is much better designed, not requiring a key of any sort, just a firm click to assure it's locked in (and it won't work if it's not locked in). As far as we know, only HomeMed, the home infusion company of the University of Michigan offers this pump. The rechargeable battery is about a third the size of the pump and attached firmly to the bottom of the pump, essentially making the apparatus appear an inch and a half longer. If you want to minimize size and weight, 2 AA batteries will operate the pump and they last 2-3 days. There's an alarm that warns you when the batteries are almost drained.

We currently have a huge hospital pump (from Apria) to infuse the Omegaven, but Critical Care says a second Curlin is all we need. YAY! I hope that's true. We tried to switch back to HomeMed, but since the UM refused to pursue the Omegaven protocol for us, the home infusion company wouldn't support our use of Omegaven, either. While we were happy to switch our medical care to DeVos Children's Hospital in Grand Rapids, MI, we really liked the service from HomeMed. The pharmacists, service, pumps, and supplies were really excellent. Shame.

Happy Thanksgiving!

We are so happy to be home. And the best gift for which we are thankful, aside from a warm welcome and home-cooked family Thanksgiving with our Kalamazoo family, is Bo's liver functions came back normal as of last week! You may recall that his direct bilirubin was at a high of 8+ in August. It was 0.4 as of a week ago today; the high end of the normal spectrum.

He's added a quarter inch and almost half a pound since our return from New England.

Bo's First Five Months in a Nutshell

After Bo's birth, we spent his first 5 weeks of life in the hospital ICU, at the end of which we were told that Bo was born with a very rare and life-limiting condition known as Microvillous Inclusion Disease. There are maybe 60 known cases in US history. They told us we would be lucky if he made it to 3 years of age. And that the only therapy to keep him alive would also be the mostly likely cause of his early demise, from liver damage due to nutrition via I.V. Those were very dark days for us, filled with grief and terror. Last week, we returned home from 6 weeks in New England, where we were seeking medical therapy in hopes of prolonging Bo's life -which our doctors in Michigan said was impossible. The change in therapy was simply substituting fish lipids for the lipids he was receiving, which were plant-based. We didn't know what to expect. We only knew that Bo's liver was already insulted and injured beyond anything we could manage ourselves (his bilirubin went up to 8, where the upper limit of a normal liver is 0.4). As of this past Thursday, his bili was 0.9 and dropping. We remain mystified and grateful for the love, attention and prayers everyone in the family has been sending us. Whereas we were not sure he would make it to his 100 days birthday, now we can even begin to hope for the future and plan for his life with us for years to come. And even though he will most likely remain dependent on an IV for his nutrition for the rest of his life, we continue to feel blessed and amazed that we can now even contemplate a 'rest of his life' to come. Truly a Thanksgiving for us. This is nothing short of a miracle.

Walkies!

Bo loves loves loves the trees. In our neighborhood in New Hampshire, there were like, five young trees. Three maples and two willows, or something pathetic like that. Here at home, we live in the oldest neighborhood in town with towering 90 year old oaks. Bo is completely mesmerized. I can take him on hour long walks with him awake and agog. Here he is wearing a stylish Bolivian 2005 commemorative hat. What the significance is of 2005 is beyond me. But here he is. Cheeks and all.

Life is miraculous. We are amazed and grateful for our blessings and all our beloved family. Truly a Thanksgiving.

Before, After and Beyond

This is before and after Omegaven. You can see how much bigger he is now, and how much better his color is.

Hooray for DeVos Childrens' Hospital. We found out today that they approved the protocol that will allow us to get our Omegaven here instead of having to go to Boston bimonthly.

PIC appear: after, before, before, after (wonky alignment issues, sorry)

Sad to Leave our Docs in Beantown; Glad to be HOME!

Just so no one is fooled, he cries a lot, and loudly. Mostly, when he's fighting his afternoon nap. We knew he was a fighter, but really. And if he feels like Mommy is not giving him enough attention (most of the time).

He yelped for like a minute, and went down like a box of rocks in his own crib tonight.

What a blessing to be home!

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.

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!

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.

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%!

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.

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).

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.

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.

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?).