No More Fever

Must've been a cold. He's still getting too much fluid, by my estimation. But that's way better than not enough. He's a little puffy.

But no more fever, and his antibiotics end today, so that should make his output decrease and his butt feel better.

Can't Wait to See You!

We got to have dinner with the O'Connors Friday night, and the Nwankwos on Saturday. What a great weekend. Although Bo was a bit of a bully and kept plucking the pacifier out of Sam's mouth. Not very nice. We were so excited to meet them; and delighted with how great Sammy s doing, and that they were going to get to fly home and be reunited as a family, too!

We had a crazy busy time getting everybody home yesterday. Bo was a great traveller. He slept through both flights. Passengers and crew both thanked and congratulated me in turn; as if I had anything to do with it.

We were all whipped and had deep sleep in our own beds. While Bo seems less gaggy, he ran a temperature last night, which as recurred this afternoon. So they drew labs and he missed his feeding clinic, again.

My knee-jerk reaction would be to crawl under my desk and hide. But since I am an adult, I will get through my email and go home to do laundry. Sigh.

It never ends.

Back Bay Boston!

We love being in the Back Bay: walking Newbury and Boyleston Streets, watching ducks in the Public Garden and cruising into the Commons, grabbing supplies at Trader Joe's and Walgreens (constantly- what would we do without them?).

This is Bo getting ready for a walk on our dining room table at home. Home! Boston is glamorous in its own preppy way, but home is so much nestier.

Thank you for visiting us, Dawn! And bringing gifts and treats. It is such a blessing and a relief to see a familiar face under these stressful times. Especially a familiar face we haven't seen in 10 years!!

And we even got to see new faces: The O'Conners! We love them already, and are so excited they are flying home the same day we are; Sam's bilis are in the 2's range already!! Hallelujah!

And, we had a great (but 2.5hr long) visit at childrens' for the short gut clinic. I showed Dr. Lo the article in Nature Genetics that identifies the gene that causes MID (published only this past August!); turns out his fellow works for the 1st author on that paper!! And Dr. Lo pulled some strings and got us a consult with one of the nephrologists TOMORROW. Wow. What a day.

Not exactly relaxing, or vacation, but rewards and blessings covering us from head to toe; can't complain.

Bad Mommy

Am I a bad mom for putting random things on Bo's head? But it's so cute! Who can help it? Really?

We are all here, in good health, and happy to be together again.

Anyone in Boston we so callously forgot to contact, please do email, because we really do want to see you.

Love,Kinn

Made it out of the Zoo!

The boys are in DTW laying over! I can't wait to see them!!

I am so not at my best without them. When I got into Boston on Saturday, I was tired and confused. I fell into deep blackness of sleep on both planes, thinking briefly as my subconscious registered the whir of landing gear that I would never be able to rouse myself out of these exhausted naps. Then when I got to the hotel, they couldn't find Bo's medicine. And on Sunday, between conference sessions, I took time out to scream mercilessly on the mailroom boys. Because no one could find Bo's box. Not even the kid who spoke with the pharmacist, and told him that they had it. Not very gracious behavior for a Sunday. I specifically remember missing last mass in favor of fuming a these impotent youth.

God save me from myself.

But thankfully, the box was located before the end of the night, and now we have not one, but TWO refrigerators in the room.

Reunion, Tonight!

Today is my last full day of work. The boys fly in tonight. We've got a crib from the hotel, borrowed some toys, books and a full sized stroller from some close friends, and can't wait to finally be reunited.

The bad news: Murray peed on Bo's luggage when they got home from hospital, yesterday. I am beside myself, as this is really the last chance for her. And it's clear that she does not want to live with us, if the us includes Bo.

More later.

Exhibit Toy

Toys that are not toys. Please see the exhibits presented here.

They are getting discharged today, and should be flying into Boston tomorrow night. I am slowly being poisoned to death by conference food. I think, in the long term interest of everyone involved, I have to shake my frugal dedication to eating the free food, and go find something that was actually grown in the earth.

A Slight Wrinkle

Bo and Jose are back at DeVos due to an erroneous, but at the time, alarming set of labs. Unfortunately, once you're admitted to the hospital, the docs find all sorts of additional testing to do, since you are already there. The plan is to get discharged Monday, and fly to Boston to meet me Tuesday, which is just as well, since I am working all day every day through Wednesday.

for your viewing pleasure, more bathtime bo butt

In Honor of Bo's Discharge from DeVos

I was supposed to speak to my coworkers today about our experience with United Way organizations through our life with Bo. Instead, I wrote a letter, as Bo was still in-patient. Thankfully he IS being discharged today. And if his morning labs look good, we will proceed to Boston as a family.

My United Way Letter:

Dear Mary,
Thanks for keeping up with us. Bo seems to be doing better today. It’s hard to say. Also, thanks for doing the presentation in my stead. I guess it was my optimism and exuberance that had me convinced that we’d be home sooner. This is a late night missive, and so I hope it isn’t too rhetorical.

Dear PCS Family,

I was deeply honored to be asked to speak to you about my experience with Bo, and am sorely disappointed to be sharing this with you in a letter, from my son’s hospital room. Thank you for your good thoughts and wishes. Bo seems to have stabilized, but because he is a medical anomaly, we can only hope and guess how this will play out.

I’m glad we decided to listen to his doctors and bring him up to Grand Rapids. I only did it to show them that being at Bronson would have been the same thing. I was wrong. Right decision, wrong reason.

On the one hand, we realize that each day we have with Bo is a gift. On the other hand, living on the edge of life and death can be terrifying. But none of this would be possible without something as simple as the person who gives blood at their local Red Cross Drive. Because even though Bo’s condition is rare and requires all sorts of specialists, if it were not for the 5 blood transfusions he received in the first few months of his life, we wouldn’t even have the privilege of sleeping on hospital cots, thumbing our noses at the specialist group in Ann Arbor, and finding ways to keep Bo healthy and thriving.

As many of you know, Bo was born with a rare condition that precludes him from absorbing the necessary fluids and nutrients to survive on his own. According to the literature, he was not supposed to survive his 9 month birthday. He turned 15 months old this week. To my knowledge, there are less than 6 living kids in the US with this condition. In a typical intestine, it is lined with something like a shag carpet. All those fibers provide lots of surface area to absorb. Someone with Bo’s condition has a gut lined with something more like linoleum; those fibers are in the wrong place. So he receives artificial nutrition intravenously. This can be tricky, as the body has a harder time regulating itself. And last week, he was hospitalized with a critically low potassium level (too low or too high can cause the heart to stop, not good). They have been playing around with his fluids to stabilize this.

Which brings me back to the Red Cross. I believe that the arrogance of immortality is a protective shield we need in youth, and times of plenty, so that we may turn our attention to living, more than just surviving. To creating and innovating, to giving and rejoicing, to dreaming and reveling in the abundance of life. And sometimes that exuberance, ignorance or arrogance can allow us to take the right path for perhaps the wrong reason. So maybe you just want the cookie, or a few more minutes to stretch your legs. Maybe it’s something you do automatically without thinking. Maybe it’s the chance to lay down for a minute at work. Maybe there are lots of wrong reasons to give blood. But it will always be the right decision.

Maybe you will decide to give blood to support Bo. Maybe I originally gave to the United Way campaign to get a few more days off. But maybe now it’s more than money we’re talking about. Maybe I am, finally, as a recipient of these services, so lovingly given, feeling the enormity of what it means to be a part of the human family. That we are responsible for the least among us. That we can bring both bread and roses to the table. That we need to feed both the body and the heart. That what we give to our community, in time, blood, or dollars, brings this grace, these roses back to our own table through the act of loving the least of us, like Bo. Although few things in life are certain, the odds are that most of us will live long enough to have to either endure ourselves or support a loved one through strife, tragedy and eventually death. And it is the compassion and the friendship from our community that nourishes our starving bodies and hearts, and gives us the power to stay strong for those who need us most. It is in receiving that we embolden our own giving. While our experience with Bo hasn’t required a huge number of United Way services, the few organizations we have benefited from have literally saved his life: the Red Cross and DeVos Children’s Hospital. I intend to support these organizations long after my Bo is gone. There will be more babies who will need transfusions and a good hospital to help them survive, so one day, they too can celebrate the abundance of life, and live exuberantly. With both bread and roses.

Whatever the reason, make the right choice.

Love,
Kinn

Worry and Sleep

Are we all still going to Boston? Should I go alone? Maybe Jose and Bo can come after all his docs return to Boston on Monday? Will we need to MedEvac them? And then fly back together? Will they let Bo on a commercial flight? How nervous should we be? How nervous are his docs?

I need to go either way. And really, I want the Boston guys to weigh in on how they think keeping Bo stable can be done. I am sleepy. He is sleeping. We are worrying. My throat is sore (!).

We need to make some decisions and get some logistics going. This is going to be a very last minute thing. Like, late in the morning tomorrow (Friday) we will make a decision. And start acting on that decision immediately.

Friday, or Bust

Dr. Doom + Other Dr. Doom = Friday discharge. Bo remains relatively stable, but with enough potassium fluctuation to warrant a fist fight between the good doctors. The only thing they can agree on is keeping Bo through Friday.

A picture from better days this summer.

Thursday Discharge, We Hope

There are 4 Docs following Bo during this week's stay: 2 GI's, a nephrologist and a hematologist. The equation for nights of stay = 1 business day/doc + 1; so we are hoping to go home Thursday. Cutting it close, but better than missing our flight to Boston on Saturday
(!). Bo is finally stable, had the catheter taken out yesterday morning and has been in high spirits all day. Sadly, the Cyr's won't be able to visit us when we are out there, but we are planning to meet up with them at next year's Oley conference in St. Petersburg, FL.

Rough Night

Bo had a horribly rough night last night due to the method of urine collection the nephrologist insisted on. But that's over, and hopefully we are in the home stretch of observation before discharge. He got a chance to play with a few other kids in the playroom, and will hopefully have another monster nap today to make up for his night of less than restful sleep.

Long Weekend Extended

Bo will have to remain in-patient at least till Wednesday. poor thing. Hopefully the next few days are for observation, only. Luckily, we were able to secure accommodations at the hospitality house here (like a Ronald McDonald House) through the end of the week. And we still have a few good friends in town, to help take the edge off.

Don't Forget the Ativan

Last night I talked to Dr Doom and was in no mood to post. After a good night's sleep- no yacking!- and a shower, and talking to Dr Doom again this morning, I feel more confident that we may actually get home Monday. They are collecting urine from Bo today and tomorrow, and hopefully this data will generate more answers, rather than more questions.

Mystery Baby

Too high in the AM, normal by PM. They pulled labs as soon as Bo was admitted, and they were normal! But, his hemoglobin is a little low (from all the labs!) and they want to run some extra iron into him. Some people are allergic, so the first (and sometimes second) iron infusion is run in the hospital. The nurses monitor vitals every 15 minutes for the 1st 4 hours is the protocol. So we're not here for no reason. And we got to see his GI and are waiting to see his nephrologist and hemotologist. It would have been impossible to schedule all three in the same 2 days with such short notice, so I'll consider it a wash. Meantime, Bo and Jose are catching up on their sleep. What a way to spend your birthday, poor Jose.

Bouncing Baby K (Potassium)

Now the Potassium is too high and we get to check into the DeVos Suites. Long weekend in Grand Rapids. I spoke too soon.

First Feldenkrais Lesson in Town

He was NOT into his Feldenkrais practitioner. He wasn't into his ABM practitioner either. But he wasn't scared of her. She is an older Chinese lady and bears a striking resemblance to me and my mom's side of the family. She did some accupressure for all of us, as well. Yum!

Above is my current desktop. Below, a cute picture before our current heatwave.

Quiet Weekend at Home!

Bo lost a smidge of weight and was acting a little funny this weekend, but not worrisome enough to send us to the Inn. His labs were drawn this morning and I am hoping hoping that we don't have to pack him up for another hospital visit.

Bo got to see 3 of 4 grandparents on Sunday. He was grinning from ear to ear. And Jose got to smoke a ton of meat. Yummmmm!