another day, another new blog

I'm posting these days to mybeamishboy.blogspot.com 

Some places are still painful to visit,

even when we're smiling.

I imagine this site will hang out for a bit 

for those that want to reflect, for us.

Peace,

Jen

TEAM THOMAS

Second attempt. Following are the long-awaited details of Hospice of Michigan's annual Walk & Remember. The money raised at the walk supports Hospice of Michigan's open access policy, which allows children and adults to die with dignity, family and the best possible care regardless of ability to pay.

Date: Saturday, May 17

Time: Arrive @ 8:00 a.m.

     Walk begins @ 8:35 a.m.

Location: East Grand Rapids Middle School

  2425 Lake Dr. SE

  Grand Rapids, MI

Parking: Available at East Grand Rapids Middle School & designated streets

Distance: 5K (about 3.1 miles)

Team Name: Team Thomas (in memory of Isaiah Thomas Armstrong Voss, a great lover of Thomas the Tank Engine)

Donations: I have donation forms and tax-deductible receipts. If you'll be attending the walk and fundraising, e-mail me your name/s & address at oneredpoppy@hotmail.com and we will register and send them out immediately. If you believe you will raise $100 or more, you are eligible for a T-shirt; if you would like the shirt, please include size in the e-mail as well (s, m, l, xl).

If you will not be attending the walk but would still like to contribute, you can do so in three ways:

online at www.hom.org

send it directly to us at the address listed below

call Roxanne Kiesling of Hospice at 1.616.356.5266

BONUS: If you decide to walk with Team Thomas, you will have the chance to walk (and even possibly carry) a real live Hospice of Michigan board member, our very own Joe Voss, esquire. Don't miss this once in a lifetime (or annual) chance to see Joe walk three miles (in one day)!!

WALK AND REMEMBER

Saturday, May 17th falls two days before the eighth anniversary of Joe and I living in marriage and ten days before the first anniversary of Isaiah's dying. On that day, Hospice of Michigan will be hosting its annual Walk and Remember  fundraiser. Funds from this event go toward H.O.M.'s Open Access Policy, which provides compassionate care to all who need and seek it, regardless of age, diagnosis or ability to pay. This is a unique and important program and our family will be there: to remember Isaiah, to support the mission of Hospice and because we believe every person should be able to die with the same level of care Isaiah and our family received. 

If you are interested in joining us, please do. If you are interested in supporting us as we walk, we will be accepting donations made out to Hospice Of  Michigan. Donations can be mailed to:

Jen Armstrong

118 E. 16th St.

Holland, MI

                49423

I'll be revisiting this as it gets closer to the date. For those interested, there is more information available on the Hospice of Michigan website. Hospice of Michigan is a non-profit organization and all contributions are 

tax-deductible.

As always, thanks for walking the path.

Peace,

Jen

Under the Weather Report

We're not sick, just literally under the weather. It's been snowy and sunless for over a month so we've been getting creative in our hibernation in order to stay sane and mostly chipper.

Joey and I recently attended an Unschooler's Winter Waterpark gathering in Ohio. We had a chance to meet some of the 900 wonderful unschoolers that made the trek from around the country. 

At home, Joey's been listening to a lot of books on CD. One of them has him interested in selling real estate, so he's posted a flyer to the front door listing our house for sale. It's haunted and has bats, but it's only $200 and he's giving tours; call if interested. 

We've also spent a lot of time outside and playing with our friends in the West Michigan homeschoolers group we're a part of. This weekend we sign Joey up for Little League and check out the kids' day at the local karate joint- I agreed to a family karate class!  Joey has decided he's ready to explore a bit beyond his own karate creations, which most of you have experienced (in the kidneys or the forearms or the stomach).

I've been writing and playing and thinking, not a lot of change there. I've been leading art days for a group of 10-12 kids each month. This spring we'll be exploring printmaking, papier-mache and holding our second annual Jackson Pollock Day. It's a lot of fun.

Joe is expanding his entertainment law practice- and raising his "cool" level in Joey's eyes. Just yesterday, he talked with a rock star and a detective and Joey was all ears and eyes and esteem.

I wanted to check in with the joy we've been living because I know at times only the difficult spots come through in the blog.

Peace,

Jen (and Joe and Joey)

January 18, 2008

In the spaces outside

the house, a father and Saint Francis

wear unmatched mantles of white;

weighted paperwork and lightest snow.

Within, a brother plans the next mission

to Mars, commander in control

of the living and the dying, adored

by scores of brothers in arms.

A mother stumbles on

words, repeatedly writing: funeral,

seizure, failure. Later and incomplete,

they will eat pizza, for the days he lived

and the day he died. No cake

will be made, in honor of the boy

with the blinding smile.

We can't begin to explain, and you can't begin to understand, except by trying. Thank you for trying, and in the trying, loving us and and honoring Isaiah.

Peace.

i offer up:

is my joy so small?
a question, not mine, but one i keep on the chalkboard by the phone. sometimes i forget to ask myself, and i find anger everywhere. other times, my cup overflows and i find the question quaint.


in christmas, in memories, in the new year
and in the now, i hope to find my joy is
not so small.


and for all of you, we wish no less than a
joy large enough to carry you.

happy holidays.


jen, joe, joey
and in peace,
isaiah

questions

life has been a series of questions and answers, and our family life since isaiah died has just been a continuation of the series. today i wondered whether or not we should change the name of this blog like we changed the message on our voicemail. this hasn't really been a place we've used for much of anything since may, when it fed our need to communicate with lots of interested people at once, and it provided a good outlet in the midst of stressful times.

so i don't know the answer- to the blog question or otherwise. but we've been walking together the whole time--in the redwoods over thanksgiving as shown above--and through ordinary life and all of its challenges. memories of isaiah are with us always- and i think they always will be. i hope so at least.

wishing peace over the winter holidays.

joe

about a boy

Joey today turned seven. I told him the 52nd rule of being seven was giving directions to the bookstore. He promptly obliged and I promptly dropped the 52nd rule in order to get to the bookstore.

Some moments of the boy that have rattled about in my head of late:

After watching Garfield the movie, he wondered aloud why Odie (the dog) didn't speak, while all the other dogs did. I suggested perhaps it was because Odie was meant to seem as the not very smart counterpart. "Oh no, mom, he's very smart. Every time music came on - WHAM - he started dancing right away." I tip my hat to the child who sees what I could not, who recognizes intelligence in all it's forms.

Recently, we acquired an old player piano, and Joey likes to sit on the futon while my fingers practice talking to each other. Yesterday he said, "Mom, can you play another song? You sound like a professional, but you're making me sad." I asked why, assuming it was an Isaiah moment, but he surprised me by saying that he was thinking of the brother & sister in the book we're reading, whose parents died in the first chapter. That he could empathize and name his sadness gives me hope that he will be able to chart the waters of life and of losing Isaiah when the time comes.

Lest I paint him en rose, he is also trying out slumped shoulders and whines, anger and boredom. Much as his father, they don't fit him all too well. He is also, like me, beginning to recognize his need for space, as he traverses the world of friends who enjoy his company. He practices magic tricks and has developed a love of the library and graphic novels. He chooses to continue on the unschooling path and perhaps to take up a martial art and he continues to bring us joy, as he has all the years of his life.

even when

joey and i have intermittent talks, flow of consciousness, about isaiah. during one i said it would be nice to have isaiah here to hug, that it was hard to never see him, and he said, "yeah, i wished he wasn't dying even when he was dying." he paused and followed with, "but that doesn't make any sense." oh my child, it makes the most sense.
i have been running of late, and taking joey with me, part of joe and i valuing our separate grieving. we have been camping and fishing. catching fish and learning to fillet and cook them, eating them and feeling normal: this is life. visiting my grandmother, who has lost her husband and her youngest son, and who had the gift to say, as i teared up, "you can't talk about him now, and that's normal," absolving me of feeling like i had to talk. driving to the border of quebec to spend a week in a cottage on a clear lake with my sister and her family. coming home to reacquaint ourselves with joe. joey playing and joe working and i fumble in this house that held four, and three seems so small. and mostly i am still me, poor at phone calls, ravenous at reading, finding beauty and being changed. i am glad isaiah is no longer in pain, but i can not say that it eases my missing.

Joel's Homily

Here's the text of the homily that our friend Joel delivered at Isaiah's funeral last month:

Joel Matthew Anderle
St. Francis De Sales Parish Church, Holland, MI
Memorial Mass for Isaiah Thomas Armstrong Voss
1 June 2007

In his poem titled simply “10”, written one Sunday in 1998, the agronomist theologian Wendell Berry writes words about covenant. He considers what it means to love and lose, in a poem written for his bride of five decades. He considers what it means for all of us to have actually chosen this—since we all did and we all will. And he muses that even in death, he imagines with all he knows, that he would wish he could return, to do it all again, to relive all the joys with his beloved and to re-summit the mountaintops. But not just that, he writes, “I will see that it is imperfect. (To whom would love appear but to those in most desperate need?) Yes, we would err again. Yes we would suffer again. Yes, provided you would have it, I would do it all again.” Wendell Berry points the way to Christian love, covenant, and redemption. A way familiar to Jen and Joe and Joey and Isaiah who lived it for five and a half years.

In fact, Berry reminds us that while our mountaintops make us tingle, our valleys are the most remarkable substance of our life. Or maybe it’s the journey in between. Or maybe it’s the journey. Daily life, lived through the lens of love, proves transcendent. The practice of love, then, proves to be the doorway to abundant life. Real life. Not easy life, nor painless life, but Life with a capital “L.” A life of love.

Someone once asked Jesus what it was all about, this life of ours. And he said “two things. First love the Lord your God with all you’ve got (you know, the Shema), and second, love your neighbor as yourself.” Learn to love, and love the learning. That’s our call.

To grow not just accustomed, but to become friends with the complexities of medical fragility, to fall into abiding and wondrous love with a boy whose lifespan was to be unquestionably brief, to love with a laughter that names and owns the darkness and then denies it its power by kicking it back: this is the pathway that Jen and Joe and Joey Michael have worn into a graceful, loved grove.

To love we must choose to love, we must choose a heavy load, we must embrace the sorrow that comes for us and for all creation, and we must not buckle. Not because we are strong. No, because we are weak and because we know where to find hope and strength in our place: we fall back into the Love Divine and there, in our place, for us, on our account, love is strong.

We gather in this mass to recollect these thoughts. To remember not just the amazing human being that was love incarnate in Isaiah Thomas Armstrong Voss, but to remember the God of all life who came in love in Jesus Christ. We recollect the story, we recall our place in it, and we remember the end: not death, but love; not loss, but union; not pain, but joy. We recollect the story to own it, to be enfolded by it, to share it with one another as love calls us to serve and calls us to one another. For this is our path now.

In addition to her role in the creation of two beautiful boys, Jen creates beautiful clothes. Carefully imagining, designing and crafting them—from pieces into wholes, united in theme and design and purpose: love’s work flows from her heart and hands in delicate and responsible stewardship. This is the vocational call of all of us gathered, to be weavers of a fabric of our faithfulness, as Steve Garber has put it, to weave together our belief and our behavior into a unified, integrative whole in the service of God’s love that fills us and sends us.

In the name of the Father and of the Son and of the Holy Spirit, Amen.

in this way

behind the museum glass, i see the clay jar
the shards that encased the treasure
the small bronze plaque declaring the dates
of loss and discovery
does not claim to know the location

i see the jewels in my mind's eye, red and blue they glowed
i felt their heaviness in my hand, know their weight
in my heart

i can not stop my face turning to the morning sun,
and my lips still stain red with wine and laughter
even as my eyes pool to the depths
in search of lost treasure


jda

Hotels

Just to let you know a little bit about hotels in the area... please refer to the Holland website for a good list of hotels.

We recommend the Haworth Inn which is very close by and they have rooms available for $95 a night Thursday, then $125 Friday, though with AAA or AARP, you can get that Friday rate down to $95. There's also some availability at the Hampton Inn, which has been recommended. The Fairfield Inn was also recommended, but they did not have availability the last I checked.

We weren't able to get any special rates with anyone, so go ahead and book on your own.

Thanks, Jon

Services for Isaiah

Services for Isaiah will be held at 11am on Friday June 1, 2007 at St. Francis de Sales Church in Holland, Michigan. There will be no visitation or burial services.

Here's a google map of the location.

We're looking forward to seeing folks as we celebrate the gift of Isaiah's life.

Also,please let me know if you are needing overnight accommodations, I'm working on getting some group rates at nearby hotels, etc. but won't have anything firmed up until tomorrow. You can call me on my cel at 415-846-7218.

Thanks, Jon

ITAV

Isaiah Thomas Armstrong Voss.

January 18, 2002- May 27, 2007.

It was peaceful.

Thank you all- more details to follow.

Love,

Jen, Joe and Joey

No flowers- we're directing folks to Hospice of Michigan and the Ronald McDonald House Charities if you want to help other people like us in Isaiah's name.

sunny sunday

after a couple of phone calls this morning, i think the first thing people want to know is that isaiah is still alive. he mounted a rally of sorts last night, after a couple of moments that we we were certain that he was about to die. but the rally isn't necessarily a good thing anymore, now that the focus of our care has shifted from prolonging his life to securing him a safe and comfortable passage.

he is not comfortable when he is awake anymore, so we are mostly helping him stay asleep.

joey's film festival is moving into its second day, and he is under doctor's orders to lay low until he is fever-free for a long stretch.

turning stuff off, etc.

we made the decision to turn off isaiah's pacemaker this evening, and we're not really sure what result that will bring about. we have been keeping him quite comfortable for most of the day with morphine, and he probably got as comfortable as he has been in the last few days in the half hour before the hospice folks arrived to turn it off. which- of course- makes it all the more difficult.

joey has had fevers off and on for the last couple of days- the doctor says he should get better on his own in a couple more- something is going around. he hosted a film festival this afternoon in his room, and was pretty in to making us knock before we entered. the four of us have had some quality time lounging in isaiah's bed, and have been thriving on the continued quiet.

for now- we're waiting, although we feel like we won't be waiting for much longer.

thanks for keeping us on the radar this weekend.

i would breathe life

if i thought i should. instead i watch, play movies, give sips of water, draw up morphine every two hours, and wait for the first missed breath, and the last. because i love him more than life, more than the body his spirit has been tethered to these five years. he finally fell into a restless sleep after 3am, crying out, "no, i don't want to go until the day after tomorrow." this promise i make to him, we will not go anywhere until the day after tomorrow, and he continues to sleep.
joe is sleeping after his shift. i know joey will wake up soon. i hope that he will not be feverish, as he has been these past two days. i hear the rain outside the window, know that behind the garage my young vegetable sprouts will be pushing up even more, that isaiah's sunflowers will be reaching for the coming sun.



as always, we will continue to update

steroids and opiates....

last night was a rough night- isaiah was not able to get any good rest, and he has had difficulty breathing for the past several days. we have a strong sense that we are quite close to the end- but again, it is extremely hard to tell.

we called the hospice folks to talk about the best way to approach the developments this morning, and a nurse ended up coming out. we coordinated getting some steroids that can relieve swelling in his airway, and some morphine, which can trick a body into thinking it has enough oxygen. isaiah is sleeping comfortably for the first time in what seems like a long time, and it is uncertain what will happen next.

as we've said before- in life, it is always uncertain what will happen next. we just happen to have a condensed microcosm of the human condition laying in his upstairs bedroom. a gift to us in so many ways- as you all are. we'll update as often as possible- and for now, we are strengthened by the quiet.

victory lap

we went to chicago to visit children's memorial one last time yesterday- it was only a social visit, and no one even so much as raised a stethoscope to isaiah's chest, which was nice. it was good to see so many of the people that have had such profound effect on all of our lives over the past 5 and a half years, and although there were some sad moments, i think it was a successful outing. we were able to give isaiah control over his person for the first time in that place, and i think that he certainly appreciated it. in fact, i think knowing that he doesn't have to undergo any more procedures or tests is probably the primary level at which he is tapping into the whole hospice experience. he doesn't know that he's going to die- but he knows that he's not going to have any more blood draws. and he's happy about that.

we're still getting used to the uncertainty of this process, but wonder if things would be easier if we knew what day the journey will end. laying with isaiah in the early morning today and watching him breathe with considerable labor in his sleep, i wondered if today would be the day. but now, in the mid morning sun, he's playing at the table and looking rather well.

Touchstones

I know that many of you are wondering how it is that you can help us at this stage of the journey. I ask that you continue to be our touchstones. Those points in our life that we visit to remember joy, to center ourselves. Rest assured that I (we) will ask for help, that what pride I have left is usually reserved for misinterpreting my husband's well-intentioned words (sorry, my love). Our primary foci in the coming days are keeping isaiah pain free and relatively happy and creating memories that joey will be able to reference as he grows without his physical brother. You have many gifts among you and we ask that you help us in these goals. Perhaps you are able to come read stories or play an instrument or do an art project with both boys. Perhaps you are able to have a play date with Joey while Isaiah gets one-on-one time or spend an hour with Isaiah so one of us can play catch with Joey. Maybe you work somewhere with big trucks or construction vehicles that the boys can check out. They're still kids and they love trains and dirt and playgrounds as much as ever.
As time goes on, and Isaiah weakens, we may ask for more adult help, such as with meals or lawn care, or to go for a beer.
We are talking with Joey as he can handle it, but please, if he brings it up, don't shy away. He will have great grief and anger and fear, and we do not ask him to be strong or brave any more than we are. It will be a great service to him simply to know that you are a part of his life before, during and after this time.
If you are uncomfortable with where our life is heading, we do not ask that you join us on the road. If you are along for the ride, trust that we will ask for help, but if you have an idea you believe will be helpful, just ask. If we don't need it today,we may tomorrow. And thank you, for yesterday, for today, for tomorrow.

Happy Mother's Day

I know I am once again abusing my posting priveleges on this blog, but I think I speak for a lot of people in saying this...

While we are celebrating our own wives, moms, mother-in-laws, grandmas and great-grandmas today, I for one have certainly been thinking of you Jen, and hoping that today is a quiet day at home with your three little boys taking care of you, one bear hug after another.

Rock on. Love, Jon, and a hundred other people

going home

after one of the more peaceful nights in an ICU that isaiah has ever had, we're going home this morning. we're not really sure what's going to happen next, other than that we can safely tell isaiah that we're not coming back to the hospital again, and that he won't ever need lab draws or ivs or surgeries again. our meeting with the medical staff at devos yesterday didn't answer all of our questions, but it reaffirmed what we have really always known- there is no way to fix his body so that it will last much longer. we really don't have a timeframe for when his heart or his kidneys may finally fail- i suppose it's a two week to six month window- but even that is just a guess. a hospice nurse will come in this morning to assess him before he is discharged, and they will start visiting us at home to keep an eye on him-and us. we're not bringing him home to die, we're bringing him home to live the rest of his life in as much comfort as we can provide. our focus is shifting from keeping his body running to finding peace for joey, ourselves and isaiah. we're just not sure how we will approach the coming days, and i suppose it will be a lot like the days past- one at a time.

we will be in touch.

driving into the sunrise

the early morning drive from holland to grand rapids is pretty nice- if it's timed just right, you can catch the sun popping up and over the horizon, and it stays a mild red just long enough to make the trip before it gets too bright to look at.

we met with the folks from hospice of michigan yesterday, and we have a meeting with all of the docs that have been following isaiah since we've been in here. we've generally been happy with the care, but we are ready to be done with the ICU scene. whether it's here or in chicago.

we're in the early stages of planning for what's to come, and will continue to update this site. we have internet access in isaiah's room now- so that helps.

thank you-again- for lifting us up as we try to tune into the natural ebb and flow of life with our family.

As the year turns, so approaches

the seventh anniversary of Joe and I sharing life and love together. On the day we married, you, our community, sat witness. You read the words of Kenneth Rexroth on our program, words we chose because they made deep sense to us: "I have always known that at last I would take this road, but yesterday I did not know that it would be today." Between then and now, you have continued to bear witness, to our love, our grief, our hope, our family. Today, we come to you again, to say that at last we are taking a road that has always run along the horizon of our world.

On Tuesday, we took Isaiah in for a routine cardiology appointment. It was after two rounds of lab tests and an admission and complete work-up at DeVos Children's Hospital in Grand Rapids, that we learned Isaiah's kidneys are failing. The heart surgery last June was the fix for Isaiah's heart. We had hoped it would give us more time, but it appears so complicated a heart is not meant for fixing. His heart is failing, which leads to kidney failure as the kidneys have tried to make up for the heart's decline, and can no longer keep up.

The nurses and physicians at DeVos have been compassionate and straightforward. Isaiah is not a candidate for, nor would we chooose the path of, dialysis or transplantation. We are working to get Isaiah's body to it's best possible state in the next few days before we bring him home. We will then work with the doctors and the pediatric palliative/hospice care team to give him the most comfortable and wonderful life we can, while we can, be that two days or two months.

We do not take these steps lightly. Our words are slow, and weighed down with love and grief, our steps measured by Isaiah's suffering these past five years. Isaiah and Joey have no idea that this hospital visit is any different from the others. Isaiah plays with his trucks and Joey battles his superheroes. The knowledge of what is going to come slips away, eludes, in the face of what is now. And this is what we ask you to bear witness to: a husband and wife, two brothers, a family trying, some times failing, other times succeeding, to embrace this day, this sacred journey, in all it's mystery and pain and beauty.

Isaiah at DeVos

Hey folks,
Joe asked me to put up a quick note to let you know that Isaiah was admitted to DeVos hospital in Grand Rapids last night. In Joe's words, "we're in here to deal with some kidney failure popping up most likely as a complication related to his heart."

They don't have internet access there and are scrambling a bit on logistics, but will post in fuller detail when they can.

Please stay tuned, and keep Isaiah in your thoughts and prayers.

Jon

what if you don't say no...

What will happen if I don't yell like a maniac, if I don't say no as fast as I possibly can? Okay, most of you know I'm not very good at yelling like a maniac, but I do have a pretty serious "NO" voice. And so this is a question I frequently ask myself. Sometimes I have to force myself to ask, like today, right after I pulled my new sewing machine out of the box and big eyes were followed by little fingers. Joey sat down in the chair I'd just positioned in front of it, visions of skirts dancing in my head. I waited- it is a pretty fascinating piece of equipment after all. Soon knights and dragons joined him. Whispers fell from his lips. After a few minutes, he looked over at me sheepishly. My smile seemed to give him the go-ahead to turn the volume up. "So, the prince put the princess in the dungeon (the handle of the sewing machine) and that turned her into a damsel in distress. She was mad about that so she called in his dragon to rescue her..." and so forth. Not once did he touch anything which caused me to cry out stop- but later, he and Isaiah both let me know they would like to learn how to sew. To see and touch, to pretend and work, these are gifts.

a boy's eye view

i have had the joy of having a boy's eye view of the world for the past 6+ years. i laugh a lot.

isaiah is learning to use the bathroom. at the same time, he is trying his hand at humor. combine the two, and you get statements like (gross alert), "i have to pee as bad as a crab poops." strange, but it did make his brother laugh, so i guess he made his point on some level.

joey is learning the adult game of sarcasm, though it wears much cuter on him. listening to smashing pumpkins, he questioned, "mom, did you like this song when you were a kid?" i tell him it was closer to my teen/college years. "oh, you mean when you were a young woman?" i ask what he thinks i am now. "uh, a MOM." thanks, kid.

in other boy worlds, we offer congrats to my sister and her husband as they welcomed Brodie Ryan into their lives on April 5th. see the cutie at www.blogoffive.blogspot.com.

we are going to the park, spending time with friends, handling tantrums in the middle of stores, eating thai food and pizza, gardening and running pretend stores. we look to fill you in a bit more on our joyous times as well this summer. wishing you a good weekend.

on this day, in this house

on this day, joe is wondering if he can leave me alone for a night to use the knicks/bulls tickets an icu attending gave us last month. on this day, i am drinking coffee and tea and water and trying to keep the edge out of my voice. on this day, isaiah is getting sick and crying and sleeping in a cyclical fashion. on this day, joey is sneaking marshmallows and practicing magic between trips to deliver water and puke rags. we are a family and we have a stone. i imagine you too have a stone, different shapes and textures, perhaps more than one. but you are a family and i hope that with practice and love and patience you are able to carry your stone. the following words are from barbara crooker, and sometimes they carry me.

THE STONE

was heavy.
The family carried it with them, all day.
Not one could bear its weight, alone.
Yet how they loved it.
No other stone had its denseness,
its particular way of bending the light.
They could not take the stone
out in public,
had to keep it home,
let it sing songs
in its own strange language,
syllables of schist and shale.
When the mother's back ached,
the father took the stone for a while, then passed it
from sister to sister.
The stone became a part of them,
a bit of granite
in the spine,
a shard of calcite
in the heart.
Sometimes
its weight
pressed them
thin, transparent
as wildflowers left in the dictionary.
Sometimes
it was lighter
than air.
The stone did not talk.
But it shone.

like riding a bike....

having returned to our regularly scheduled lives after our latest adventure, we're all still figuring out where we left off. i'm back at work, which is good in a lot of ways, and tricky in others. i suppose it's kind of like riding a bike in that if you suddenly and unexpectedly get knocked off of a bike, you're a little hesitant to jump back on and start pedaling full speed. i think it's easier for the boys- they are clearly more comfortable back in their own setting, where we try to give them some measure of control over what happens to them- something which they were not entitled to while isaiah was in the hospital and joey was shuttled around.

we had a follow-up visit with our pediatrician yesterday, and some x-rays and lab work. isaiah's chest looks good- it appears that the fluid on his lungs has continued to dissipate. his lab numbers weren't completely solid, but nothing too out of whack. we'll be seeing isaiah's cardiologist in grand rapids late this week or early next so that he can help us rein in some of the med dosages that we came home on as we work to get them back to pre-surgery levels. we'll also be meeting a neurologist at some point in the next month or so to follow the brain issues, with a goal of getting rid of the anti-seizure drug we came home with.

it seems spring is making a cameo in holland, and we're looking forward to warmer days and budding trees.

safe at home....

we made it home safely last night at around 5:30. we're still trying to get our bearings around holland, and our house.

we'll keep you posted, but thanks for helping us get this far.

wednesday night update

things have been moving along at a quiet, positive pace here with one or two glitches- but nothing major. we pulled the chest tube out yesterday, and got the trach out today, and those were the big hurdles to getting out of the hospital. some cultures from isaiah's trach did come back positive for b. cepacia- which is a newish bacteria that is popping up in hospitals. we don't think it will have any clinical effect on isaiah- but it a pretty dangerous thing- particularly to kids with cystic fibrosis. the sample has to be verified at a lab in ann arbor, and we'll be out of here before the results come back- it's not the kind of thing you treat in kids like isaiah.

our plan for now is to leave chicago on friday, and we are starting the process of figuring out what we need to do to land at home by friday night- getting the drugs we need and finding the right doctors on the other side of the lake to follow up on what has transpired since the surgery six weeks ago today.

the surgeon who did the tethered cord release procedure came by tonight and offered her obligatory apologies. we've never really accepted those- it's not her fault. this visit has just reinforced what we've pretty much always known- isaiah is fragile, and his time has always been, and will always be, borrowed.

joey has been a breath of fresh air- again. thanks to joel and kathy for getting him to chicago- and to nikki and ryan and both sets of grandparents for taking care of him at various times over the past month.

holding pattern

the chest tube drainage has tapered off nicely, so i think we're moving in the right direction. it was a pretty quiet weekend- lots of laying around, and walking around the ICU in a souped up stroller. isaiah is still pretty shaky on his feet- mostly because of the iv in his groin- which will probably stay in as long as we stay here. starting to talk about getting the chest tube out, followed by the trach tube. from there, the path leads home- but we're used to not following the most direct path- so who knows.
joey rejoins us this evening after a long absence- we're all ready to be back together again- and we're hoping we can manage with all four of us here until we can all go back to holland. a few friends have signed on to help us with that here in chicago. for now, we're in a holding pattern.

as we have done in the past, and probably never do enough of, we want to continue to extend our thanks to you for staying on the path with us.

Serendipity: an addendum

Serendipity, n. : The faculty of making fortunate discoveries by accident.

Last night, I wrote the words that came to me in my sadness, but the story, of course, did not end there. Before I came to sad songs and shiraz, I had spoken with three families who were on their way home, and, in the midst of my own melancholy, was extremely happy for them.

Later, after I left sad songs and shiraz, I spoke with three other families. One mother whose 22-year old son was battling a MRSA infection of the brain. Another whose 17 year-old son became quadripalegic during a football game. And then I spoke to the 9 year-old boy who had had a liver transplant. Who had been away from his four siblings for a long time. Who had to walk around with a face mask lest he be exposed to an errant germ. And who reassured me that small children like Isaiah take a little longer to heal. In the midst of their sadness, did I find more of my own happiness.

With the smallest trach possible, Isaiah is able to vocalize again. This morning, during rounds, he asked Dr. Noah, "Can we take out my trach please, Dr. Noah?" Far from a sad moment, even though the answer was, "Maybe next week." We sit quietly this weekend, and for some of that time, I think I'll seek out those "Serendipity" books of my childhood. It never hurts to have little more on hand.

as a sculptor, so do i

the morning report comes bitter and sweet. isaiah is now developing a pleural effusion on the other lung; we can downsize him to a smaller trach, closer to no trach. Dr. Zehava Noah, the woman who created the ICU at Children's, is also bittersweet; happy that he appears mentally unchanged, sad that he inexplicably continues to fill with fluid.
tonight, i sit in the kitchen of Ronald McDonald House. a mother enters, excited that her son, a heart transplant patient who entered in step with isaiah, will be leaving the hospital tomorrow. going down the stairs, I run into another lodger and his girlfriend, she just discharged, having had a Fontan re-do the same day Isaiah had spinal surgery. both the mother and the boyfriend I count friends, fellow travelers.
i return to the room, pour a glass of wine, play songs of melancholy and turn off the lights. i know if i do not sit with this sadness, feel out it's boundaries, that i may run reckless, forgetting my many joys in a race to escape the pain i fear is endless. i turn on the lights, write these words and fold the laundry. step by step, i pace the boundaries of this most amazing and complicated life.

thresholds of relative stress....

while we were goofing around with isaiah and giving him my hat to wear, he got a little stressed out...

he's mostly pretty low-key and content to lounge around in bed- which can sometimes be a disadvantage as we're trying to get him moving around more. he has been really into a new music therapist that just started working here since we got here- she sings railroad songs and plays guitar while he fiddles around with her cool percussion collection. he gets really focused on playing music- yesterday he played a makeshift washboard with a train and set the tempo for the therapist, and really got into the fact that she played to his speed.

we down-sized isaiah's trach tube this afternoon, which moves him one step closer to getting back to having no tube at all. it may require a couple more changes to smaller tubes before we can completely remove it- but we got a bit further along at least. his chest tube is still putting out too much fluid to remove it- so that is becoming the headline issue this week. the ICU team is going to bend the ears of the CV surgeons in the morning to see if they have any thoughts. we get a little nervous when the surgeons start getting involved, so we'll be anxious to hear that they aren't breaking out their calendars to see if they can't squeeze us in to try a surgical solution to the problem. the output level has been dropping off everyday, so hopefully we don't have to listen to any proposals for drastic measures in the near future....

what's joey been up to?

joey went to a dance at olivia's school on friday night, and at first, he just sat on the coats and watched the other kids. then- and nikki and ryan can fill in the blanks here- something came over him.... and he started breakdancing. a lot. i talked to him on saturday and he said he was feeling pretty shy at first- but i guess the music just took over at some point, and he became the breakin' fool that lives inside of us all.

....on the medical front

things have been going pretty well this weekend- no real snags to speak of. still working on converting all of the iv meds to give them by g-tube, and i think we'll get that done early in the week. once they're all converted, we'll start to move them to a home-like schedule. isaiah spent most of the day off of the vent yesterday, and has been off of it since 8:30 this morning- so we're continuing the push to wean the support he needs to breathe. he still is draining plenty from his chest tube, which is really starting to bother him- but it is doing what we need it do to.

hoping all is well where you are, and that you're staying safe from the weird weather....

what we're reading (an update)

after four weeks, we've been trucking though our reading lists in our off hours- so i thought i'd link up some of the highlights in case you're interested....

keeping in the late 1800s-early 1900s mystery vein, i enjoyed murder on the orient express- a classic i never read before now. i picked that up mostly because i am hoping to get to the 8:55 to baghdad, which looks interesting but requires familiarity with the christie masterpiece. i also read the much-reviewed the road by cormac mccarthy- which was very interesting (shout to mitch to putting me on to mccarthy back in brooklyn way back). i'm doubling up with the greatest game ever played (which is getting me psyched to golf in the spring) and queens reigns supreme (which is a great queens-focused hip hop history that goes nicely with can't stop won't stop- which i also recommend).

jen read norman mailer's latest, castle in the forest-- you'll have to hit her up for a review- but i didn't get the sense it's a must-read. she's been reading monkey girl- which is about evolution and education- always a good debate topic.

we grabbed a blockbuster card last week for our nights off- and both enjoyed (to varying degrees) thank you for smoking. we both really liked the illusionist. i guess those aren't really what we're reading, but they're part of the coating we're spreading over our brains these long days....

happy sunday!

another friday

the trip to get a chest tube placed for isaiah went well yesterday, and a lot of fluid has been draining since we gave it somewhere to go. this means it was a much bigger reason for his compromised breathing than was initially thought. we did our first test off the vent for a short time this afternoon. he did pretty well, but like so many other things here- i don't think we've found the magic bullet just yet and there is some ground to cover before we can make solid progress on respiratory stuff.

isaiah seems to be tolerating food quite well, so it feels like we're getting somewhere on that issue. in the next several days, they will start trying to give him meds in his stomach, which will be a huge test.

have a great weekend!

we keep it silly....

we're getting smiles a little easier these days, and isaiah has been playing and goofing around a bunch. he still can't breathe well by himself, so we're hoping that pulling the extra fluid from his chest this morning will help that.

he has been tolerating food better than he has since after the surgery, which is really encouraging. we had to stop that last night in anticipation of the procedure today, so we're hoping that he's able to pick up where he left off without issue. the food is quite critical to any chance of escape, since all of the component parts of his chemical cocktail have to go in (and stay in) his belly before we can think about shedding iv's.

TaMater TaMarra

Isaiah and I watched Cars this evening, the first time I've climbed into the bed next to him. He's Ta-Mater, Joe is Doc, Joey is Mac and I'm Sally. We've all been assigned our roles, together on the big screen if not in reality. Tomorrow morning Isaiah will be going to Interventional Radiology, where they will most likely place a chest tube into his left pleural space to drain fluid. They will also test the fluid to try and determine why it's there in the first place. We'll let you know more as we do.

Thank you for all the smiles and laughs over the past few days; as we hit the one month mark they are much needed, much appreciated.

How do you do?

When we spent Isaiah's first year in the p.i.c.u., I lived on a diet of Three Musketeers and Diet Coke, with a liberal sprinkling of York Peppermint Patties. Since then, I've matured in my stress-based eating, though there are certain habits I continue to hold in times of anguish. I rock from side to side with my arms crossed when asking questions or contemplating Isaiah's body. I ask not to be touched lest I lose my temporary sense of control. When viable, I look to a glass of good red wine. Then there are those gifts that help lift me out of the stress, if only for a moment. Listening to "You Belong Among the Wildflowers" by Tom Petty, hot tea with an inch of soymilk every morning, humorous and touching words from you. There are others, but these come to mind. On a day with little change on the medical front (changing from 2 to 5 cc/hour on feeds, continuing ventilation), a day when many feast in preparation of fasting, I ask, I invite, how do you do? How do you do stress? What keeps you safe, keeps you sane and what lifts you up? I ask not for your names, but for your words. Let us know that others travel the roads of stress in good, bad and quirky ways.

february is waning...

we finished last week with a pretty quiet sunday--scaled back on the ventilator settings a tiny bit, and didn't do much else. isaiah is not on a good, regular sleeping schedule. he grabs long naps in the morning and the afternoon, has a little extended sleep at night- then basically wakes and naps from 1 am until daybreak. sleep deprivation is always a dicey additive to the parental mix, and i think it's safe to say we're dragging a little.

both of us have been getting restless without our creative/productive cylinders firing, and we're looking for ways to mitigate that. we're missing joey again too- but he's in good hands, and is generally happier away from this scene.

i believe wednesday marks four weeks since the tethered cord release surgery, which has become a footnote at this point. we haven't met with the new medical team for the week yet, but we'll come up with a plan when they come by this morning.

weekend line

isaiah had a pretty restless night last night, and a somewhat frantic morning. he is back to being fully ventilated by the machine (whereas before he was just getting pressure support), with a healthy flow of oxygen added in. we think his struggles are a result of the fluid on his left lung, and we are continuing to supplement his meds with extra diuretics so that he can offload some of that. we're not sure if that is working yet- but it takes some time for those therapies to work. he has really been bothered when we take the vent away- which we have to do from time to time- so we're kind of stuck for now. his chest x-rays from yesterday and today do not show much difference, and i'm told that he could have stuff going on in his lungs that won't show up for a while on film.

the iv in his left arm seemed to be causing him pain, and he was swelling up around it- so it had to be removed today, and another line placed in his groin. it's not a great spot- particularly when we hoped to have him standing up in the near future- but as long as he can't tolerate meds (or food) in his stomach, it's critical that he has access. every other possible spot above his waist are not viable options- mostly because of over-use over the past 5 years.

we don't have any food running now, and not sure when we'll be giving that a go again.

that's the saturday afternoon run down from lincoln park....

soporific sangria

Last night was my night off. I went out for tapas with a girlfriend and was lulled to sleep by sangria. I dare say it also lulled my sense of anxiety, so I was particularly upset to come in to this morning's quagmire, expecting firmer ground to stand on over the weekend. After a relatively quiet night, Isaiah is having frequent emesis, sometimes related to congestion, sometimes not. He's also spiking a fever again and is requiring more oxygen on the ventilator. An x-ray revealed some fluid on one of his lungs, which may be causing some of his breathing issues. Our current plan is to try and continue giving him a small amount of pedialyte each hour, via his g-tube and leave him on the ventilator for the time being. They will give him extra diuretics to try and get rid of some of the fluid on his lung.
Joe and I have started discussing long term plans, which is complicated even though we both have the same goal: home. Joe talks of taking him home with the trach and a g-j tube, which only allows continuous feeds with no option of bolus feeds. I respond that he will be working 60 hours a week and I'll be at home with one child tethered to technology and two boys angry that they can't do what they're used to doing. I talk of my willingness to stay here long enough to get rid of the trach and start feeding him "normally", my anger if we leave otherwise. Joe responds that he's going to have to go back to work either way, hospital or home, and that Isaiah may only get sicker the longer we're here. We are tired and stressed and we love each other in an honest way, one that allows for, must allow for, disagreement, anger, worry.


We miss all of you. Please know that we read your words, and cry and laugh (yes, Amy and I really did play the "dictionary game" in college) and miss you more. Looking forward, not much past tomorrow, but always forward.

another bug

jen made it back safely yesterday, and ame got home safely as well. now we're back in the rotation here, trying to make some headway before the weekend lull. isaiah does have a respiratory bug that has pretty much laid him out-- he slept about 20 hours yesterday, and has not been able to tolerate being off of the vent. he is getting some new antibiotics, and we're hoping to see fast results from those.

he didn't sleep well last night though, between all that sleep yesterday and a habit of not sleeping as well when jen is with him.... so another sunny, frigid day in chicago passes us by.

capricorn...

i'm not sure what this means for me and isaiah, but here's the chicago tribune astrology desk's call for capricorn today:

Capricorn (Dec. 22-Jan. 19). Today is an 8. You've learned a great deal the past few weeks, and you're nowhere near finished yet.

we surrender.

the ebb and flow of frustration

i'm not sure what the hagiographic work-up looks like on saint valentine, but i'm guessing it involves lots of patience, maybe a confirmed miracle or two, and something to do with love. my stores of patience are wearing a little thin here in chicago, as we continue the dual struggles of breathing and eating with isaiah. we are still trying to feed him, with mixed results. he has been really tired the last couple of days, and one thought is that he needs the support that the ventilator gives him- so we've scaled back the time that he's off. yesterday i asked him if he wanted to go
back on it, and he said yes.

we've discussed the pitfalls of prolonged stays in the ICU a bunch since we've been online- and it is one of the most obvious and frustrating catch-22s i've ever known. take the sickest kids to the sickest place, and if they're there long enough, they get sicker. i'm not sure isaiah is sicker than he was a week ago, but i'm damn sure he's sicker than he was when we walked in here three weeks ago- to the hour. i was complaining to one of our doctor friends this morning- he stops by just to let me vent i think- and he acknowledged all of these things. he then reminded me of some of the things that have affected jen and i so much over the past several years- he reminded me of the kids that have to add loneliness and isolation to their list of afflictions. the families that can't afford to have someone at the bedside 24/7.... the families that don't have the support of an extended network, and don't have the energy to fully participate in the care of their most fragile members..... so that perspective helps a bit- and reminds me of how thankful i am that we have the support that we have.

more travel....

we really don't look for trouble, but it somehow finds us. jen and ame are driving to lansing with joey today to meet nikki so that joey can rejoin his cousins and aunt and uncle in holly- but driving conditions are rough again. isaiah and i are holding down the fort in chicago, which is currently getting slammed with snow.

on the medical front- we tried feeding isaiah a small amount yesterday through his g-tube, and it worked for about 10 hours- then it stopped working, and we're back to square one. we're going to add a med and see if that helps, and try again today. we just put him back on the vent for a nap this morning, but before that, he was off for his first solid 24 hour period. so at least we're progressing on that front, and will continue to push to get the vent out of the room and the trach tube out. if the trach comes out, isaiah should be able to talk again, which will be great for him (and us).

the high fevers have subsided for the time being- and that's all i'll say about that- i've probably already said too much, as reporting good news has seemed to lead to setbacks this time around.

another lazy sunday....

laying around in the ICU with isaiah while joey, jen and ame hit navy pier and the children's museum there. watching the nba while isaiah dozes, and i love toy trains while he's awake. he's been pretty run down the last couple of days, and his blood cultures from thursday did grow some staph- which could partly explain his general fatigue. but it's hard to say if that result was a fluke, or if it's something bigger. cultures take a long time, which is always part of the frustration here- and they test his blood every day. i want to take a tour of the lab here to see how that whole process works at some point.

hoping to try feeding isaiah tomorrow, and get back to full days off of the ventilator. hope your sunday is pleasant. missing the rhythms of normal life- like olivia's birthday party, shoveling the driveway and going to church.

friday night

another day, another week ends in the ICU. so another set of doctors over the weekend, and a new team again on monday. at this point- some fresh ideas might be helpful. isaiah continues to spike fevers- it's pretty much been an ongoing thing. sometimes he responds to tylenol, sometimes he doesn't. rarely is he without a fever, and i think it's somewhat uncomfortable for him. it also causes him to breath pretty quickly, which tires him out, and therefore kind of limits the time we can have off of the vent.

cultures of his blood grew some unnamed bug today, so he is back on heavy duty antibiotics. without seeing results on some other cultures, i'm guessing he has a bug in his trach again. these are things that make it so unnerving to be here this long- or at all for that matter. the sickest kids come here- isaiah included- and they come here with all their bugs. doctors, nurses and therapists touch scores of kids every day, and the stuff travels- no matter how many times they wash their hands. we're not sure what isaiah's cultures will reveal over time, but we're really scared of staph infections in the blood- so the big guns are out, and we just wait.

one of the surgeons that has been following isaiah's gut over the last couple of weeks came by on her way out for the weekend to talk about when we might try to feed him again. she said monday or tuesday, and she mentioned that we can't really rush it. and she also said that we look pretty comfortable here- so no need to rush. i asked her to never take cues from us that suggest we're comfortable -- we're surviving - but we aren't comfortable here. it's not comfortable to keep guessing at what might be holding up isaiah's progress, while joey tells us he doesn't like it that we spend so much time with isaiah. we've spent a lot of time here, and no matter how long we stay- we're never comfortable. she then walked slowly out of the room.... seriously though- we've participated in isaiah's care with lots of great people here, but we're never happy to see them in this context.

jon got out of chicago this evening- and was a huge help this week.

congratulations to tj and ina on the birth of their second daughter!

the grind....

it feels like we've been here a long time, and that means that we're getting into kind of an uneasy, uncomfortable routine. isaiah spent from 8 am until 5 pm off the vent today- and he was definitely tired out from that. joey and jon continue to run about town in the cold, and we're opting for the chicken pot pie being made by volunteers at the ronald mcdonald house for dinner tonight. jon takes off tomorrow, and ame comes in to help with joey saturday. and the beat goes on.... we wait for isaiah to get better, and hope every time we walk in the room after some time away that nothing new has cropped up....

deleterious

A word that sits lovely in the mouth, not so in the liver. Some answers have arrived today, and some continue to be lost in the post. It seems that Isaiah's seizure/bleed activity was deleterious to his liver, and (do not panic, the liver is amazing) some part of his liver died. It is regenerating, as only the liver can do, yet is not quite up to its full potential, hence the somewhat off liver "numbers" and the yellow look he's taking on. With the yellow of bilirubin and the blue of poorly oxygenated blood- well, I shan't be surprised if he soon takes on a green caste. They also believe the stomach and intestines have incurred damage at the same time, considering that he's unable to tolerate feeds still. The liver is a wait and watch, and the stomach is a wait and try again in a few days, because the stomach/intestines take longer to heal than the liver. He spent most of the day off the ventilator, and we'll try for even longer tomorrow. We're "planning on" (h-a, h-a) leaving the hospital without the trach, having lived that life already and moved on to greener pastures. We've also tried to get any and every service to claim responsibility for his fevers (there are no takers) but as I said today, I can handle a fever at home any day, so long as it's not accompanied by seizures. In other worlds, also ours, Jon and Joey went to the wonderful Chicago Aquarium today, where Joey was randomly chosen to help out with the dolphin show, which made me at least as happy as him.

peace be with all of you

out of the bed

we're frustrated by the lack of forward movement- and that's been the story every time we've been guests here. but we did get isaiah out of the bed for the first time this evening. more on particulars on his condition later- but here's how he's looking in the chair....





believe me- i took a ton of pictures- this is the most smile i can get out of him. he does smile more- but rarely on demand.

view from behind the scenes

When I helped Joe and Jen set up this new blog, I forgot to mention to them how to delete my posting privileges, so I'm sneaking in an unauthorized post to report on my first day back in Chicago with these guys.

There's relief and some wholeness, it seems, for these guys to be together again as a family unit--and nice to see the four of them together in the hospital room (though I could only watch for a minute as my being over there put them over the maximum number of people permitted in their PICU room). It was especially nice seeing the reunion and knowing how many people chipped in to have Joey cared for during the last two weeks, and then to get him to Holland, and then to Chicago from Holland through the blizzard.

I've been able to jump onto Joe's computer while he sits by Isaiah's bed in the PICU, Isaiah having fallen off to sleep, his legs crossed, rainbow pillow by his head, and a smattering of Thomas the Train cars on the tray. It's peaceful in a way that perhaps masks the underlying anxiety and uncertainty that is unavoidable as long as they are here.

For their part, Joe and Jen are exhausted, each in turn as they rotate on and off one night from the next. They tag team so that one of them is always here with Zaya. Through the exhaustion, they are beautiful, amazing, vulnerable, and fallible, often all at once, in person just as in their writings. In the little time in which they overlap they maintain their marriage, spars of wit and humor, exchanges of information, questions and concerns, embraces more like leaning on each other. It's amazing to me they have much left to write, knowing that too takes a lot of energy.

But I think they gain strength from sharing in a way. They read the responses and talk about them, lightened by the encouragement. I know they've also been humbled by the response to their request for help, as so many of you have chipped in there. I think it's extremely difficult for these guys to be in a place like Children's and know that people literally around the world are looking out for them, financially spiritually emotionally, while another family just a few doors down, or somewhere else in Chicago, Haiti, Africa, is just trying to keep it together with what little they have. Perhaps to know you're blessed is to also honor the fact that there is a responsibility that goes with that, and to share what they have with others, which in turn comes back to them again. This is what tends to come from their hearts and minds, expressed in these journals, and in the thanks that is their sharing.

Meanwhile, Joey and I entertain ourselves in the subzero climate of Chicago, by hitting the mall(s) in search of Lego projects and Thomas the Train cars. He enjoyed the Lego store and riding around town in cabs.


For my part, I just want to thank everyone reading this for helping these guys out, and also for playing a part in making it possible for me to be here with them for the week. Jan Potts, for the plane ticket, Erin for taking both kids for a week, Alan for letting me crash his place at midnight last night, and all of you who have helped out for expenses for their stay here.

Now they are sure to revoke my posting privileges, so with that, goodnight.

made it safe....

so it looks like the snow along the i-94, 196 corridor between holland and chicago has finally stopped, and only 2 hours after it took me 4.5 hours get through it!

came back and found isaiah doing pretty well- still not getting great rest here, and that is always a challenge. we're trying to get his feeding going again, and will try to get some more time off of the ventilator. joey and jon have both gotten reacquainted with the picu and the ronald mcdonald house, and the folks at the kohl's house, another guest house close to the hospital, found us a room for jon- so we're pretty set up to focus on getting away.

it was nice to pass through home yesterday, but i'm shaking off the reminders of life as it was before the latest unpleasantness. it would be nice to be there, enjoying the 16 or so inches of snow on our back porch. the novelty of practicing law for a living again even sounds attractive. but for now- i suppose i need to count myself lucky to be spending every other night awake with isaiah- because even though he has a ways to go before holland- at least he's able to express more and more displeasure with his predicament every day.

the great white north

joey and i are getting ready to head back to chicago, and we're hoping for some improvement from the treacherous road conditions we saw yesterday.... sometimes it seems like there's a storm cloud over us--there's not much snow in the midwest except for this little stretch of road we need to drive on this morning.



things are relatively quiet at children's memorial. not much happens on the weekend, so we didn't gain (or lose) any ground.

"You seem to be worried."

I found this to be an odd sort of statement from our wonderful dayshift nurse, and it led me to wonder whether Joe and I have been so long in their midst that we seem more caregivers, or peers, and less parents. Perhaps our ability to suction is seen as our ability to be in control, or our ability to laugh is sometimes taken as lack of worry. Isaiah today was the most responsive he has been. Yet, even as as I smiled at his smiles, I searched for clues: purple veins under his eyes, redness at his central line insertion site, shaking hands and quivering lips. Sometimes it is frantic, as though if my observations could only paint the perfect portrait, the doctors could have their "ah ha" moment and right his body.
He continues to be with fever, and Tylenol is given around the clock, Motrin being ruled out due to risk of bleeding. Feeding has been attempted again, but he immediately gets sick. He was off the vent for only two hours today instead of four because this afternoon his breathing rate went up to 50-70 breaths per minute on the vent. He is on a narcotic wean, though he continues to have symptoms of - what? A high fever, a neurogenic fever, withdrawal, blood irritation, drug reaction, sepsis...? I find myself wishing for complete ignorance one moment and a medical degree the next. But always, every moment, I wish for my son.

fall precautions....

we noticed that someone put this sticker on isaiah's ID tag a couple of days ago- they use it to identify kids that are on seizure meds or otherwise at risk of falling- which, in and of itself, isn't all that funny. but we still think the sticker is kind of funny. we grabbed a bunch of them- they may come in handy some day- at parties maybe.

the neurologist happened to notice isaiah staring off into space this morning, and he wondered whether he might be having a seizure- so we spent the morning with an EEG in the room. and then spent some time with an echo machine in the room, looking for "vegetation" in his heart. it's a real long shot at explaining his fevers. if he has any cardiac vegetation, we'll explain more.

another long day- and now trying to figure out how to navigate the predicted winter storm expected to hit west michigan just as we want to get joey to chicago.

what we're reading....

as you might expect, there is a quite a bit of downtime while we're here- so we read. it's hard to find a quiet place to flip through the channels at the ronald mcdonald house, and we generally start to bristle a bit at the noise that television brings to a room after we've been here for a while. isaiah is still pretty wiped out, so there are stretches of the day and the night that we just kind of sit around- so we read.

i recently finished arthur and george by julian barnes, and jen is blazing through it now--it's really good. i'm in to the beautiful cigar girl now by daniel stashower- which is also really good. when i leave that somewhere by mistake, i'm reading vows by peter manseau- which is a little crazy because it's written by a guy who's parents are former a former nun and a former priest. pretty good though. jen has been dipping into some rilke poetry- always good and life-affirming, even when (especially when?) he's writing about death. we're picking through the news via the chicago tribune- but it's pretty much all bears, all the time at this point. our regular periodicals are getting flipped through as well--the ehrenriech piece jen referenced last week is in harpers and there is a timely article by jerome groopman in last week's new yorker called "what's the trouble: how doctors think" (link is to this week's issue, though).

we focus pretty exclusively on the craziness of isaiah's condition on this site- so maybe this will give you flavor of what we fill up some of the quiet(er) moments with.

progress report

we've had some success in making progress today, although it was a pretty ambitious agenda. isaiah is off of the sedation drips, and that has been ok for the last 12 hours or so, although he had a couple of doses to get help him sleep through an EEG (checking on the electrical pathway activity in his brain). the results of that exam show some improvement since a week ago, and that level of progress is pleasing to the neurologists because it could indicate that he hasn't lost significant function after the events of last week. still a lot of time before things are clear on that front. we had him off the vent for an hour today- with mixed results- mostly favorable. we'll go back for more tomorrow. we tried to start giving him some pedialyte through his g-tube this afternoon, and that's where our luck ran out. he couldn't hold it down, and his belly is not awake enough to process anything, so we stopped. we'll try again tomorrow. isaiah is now fully loaded on an anti-seizure med, and we have started giving him scheduled doses of that. not sure how long he'll have to be on those- but we'll call it short-term for now.

so while not a home run, i think we've moved the ball a bit.

trying progress again...

we're going to try to give isaiah some time of the vent today, and we are cutting back on some of the meds- mostly just to try to keep some forward motion while we watch carefully for seizures. he has had two since the big one last wednesday.

he is constantly asking for water to drink, and we'll going to try- slowly- to get his stomach back to work today.

he's doing pretty well, all told. there are still plenty of mysteries, and i'm not sure all of them need to be solved- but he is spiking fevers for no apparent reason, and that's a sure block of the exit- so we carry on and take things as they come. looks like we'll be here to catch the super bowl fervor at least- so go bears (sorry indiana folks!).

S is the letter of the day

Or so it seemed, as Joe and I found ourselves walking back to Ronald McDonald House this evening, speaking of Sherlock Holmes and seizures. Sometimes it seems soon and very soon we will reach our home, and sometimes it seems we could walk no slower. Isaiah, upon waking from a late afternoon nap, had another seizure. Though brief, it was terrible and we found ourselves again living in a surreal world, where we talk of shared literature and break bread as our son has his brain scanned. The scan revealed no changes, and we will have to wait until morn to speak with the neurologists for a possible cause. His blood sugar was normal, so the most likely culprits are the irritating blood which remains to be reabsorbed or the high fevers he has been spiking. In the meantime, he has been restarted on anti-seizure medications and covered with ice cold cloths. Again we reinvent ourselves, hare to tortoise, hare to tortoise.

[not sure what day it is] morning

i think the nights are long in the ICU by definition- last night included. and i seem to forget that every time we get out- which hopefully means i'll forget it once we get out this time, too. i hesitate to post anything about the positive things that appear to be happening, mostly because in one of the initial posts about this visit i said something about coming home this week (like today). but i think that things are moving in a good direction, and we're getting closer to the brass tacks challenges of helping isaiah get back to the condition he was in when he wheeled his firetruck backpack into this place.

we have had some success in reducing the support he's getting from the ventilator, although it appears we may have rushed this reduction once or twice already- so it's going to be slow. isaiah still hasn't had anything in his stomach- and it's been 7 days. 7 days with nothing in your stomach and narcotics dripping in to your system makes for a slow resumption of normal nutrition- so i see that as a big hurdle. we've still been seeing some periodic fevers, and the antibiotics that he's on are being given to treat an unknown infection- cultures have grown no know bug yet. and- as some of you may recall- isaiah has some addiction issues, meaning that his body has been known to grow dependent on narcotics, and his withdrawal episodes have been pretty scary in the past. drips are still running, and we won't really know if he's going to struggle this time.

before i find a place to sleep, i want to take this opportunity to thank all of you for the help- positive thoughts, prayers and material help. even in hard times, we struggle with needing help- maybe because we're a young american family living in a nation that is one of the most prosperous, developed places on earth- yet we still have an underdeveloped sense of what it means to rely on community.

not cardiology....

so after a careful review of the scans from yesterday, the cardiology team doesn't think that isaiah's recent struggles are a result of faulty plumbing, or poor blood flow following the surgery. so that doesn't really leave a whole lot to do in terms of diagnostic testing and interpretation, which leaves us in ICU limbo.

i suppose we were hoping that something would have turned up as a result of looking at his brain and heart stuff yesterday- even if it meant uncovering some problems there- if only to have some answers about what has been going on, and about what we needed to do going forward. so now we're just here, trying to keep him comfortable, and looking to start backing off on the drugs and the support he gets from the ventilator so he can start doing more on his own.

tuesday morning

the big ct scans went off relatively well yesterday, pretty much a head-to-toe look, with a focus on the cardio-vascular plumbing. the initial results show that his brain still looks stable. the blood from the "event" of last wednesday is still there, and still may be an issue- since when anything that shouldn't be in the brain is in the brain, it can cause problems. as i've been typing this, he spiked a high fever- so we're revisiting that while we wait for cardiology to give us their full assessment of yesterday's imagery.

we put isaiah on a versed drip, which is a keeping him pretty sedated. when he's awake, he's extremely uncomfortable- which is pretty unnerving for us. in the meantime, the attending physician's father went to brooklyn college, so we've been traveling down memory lane while we figure out what to do.















not a whole lot else is going on- this is plenty. we're missing home and joey.

Coordinating Direct Support Winter 2007

As you know, these guys don't live in Chicago anymore and it looks like they're going to be there for longer than they had planned. As you may also notice, they don't tend to ask for help much. Not only do they feel blessed for everything they have, but they are also always and amazingly aware of how there are so many others around them that are suffering as well.

They've outlined some ways you can help if you feel moved to do so in the past, and I'll paste those below. In addition, you can also send money to them through me to help cover some of the day-to-day expenses they're taking on now, and which may increase as things go on. As Joe would say, no pressure, and as they've said in the past, just checking in on the blogs is the best support you can give.

If you do want to give money, there's several ways to do it--paypal, credit card, or check. Just email me: and I'll coordinate it.

This is from last year:

As we get ready to head back to Children's Memorial this June, we want to highlight them as a great organization to direct support to. We've found opportunities to show our gratefulness to Children's Memorial Hospital of Chicago, and we invite you to join us in the endeavor.

Unlike our previous stints at Children's, we're not based in Chicago this time- so home is a long way away. We will be relying on the Ronald McDonald House, so we encourgage donations to Chicagoland Ronald McDonald Charities.

We want to acknowledge the immense and continuing support we have received from family, friends and strangers over the past four years. We understand everyone is in a different place and ask that you do not feel obligated to donate.

Peace be with all of you,
The Voss Armstrong family: Jen, Joe, Joey and Isaiah

Thanks!! Jon

monday morning

I was off duty last night, Joe on. Isaiah had a relatively quiet night and has been sleeping, with some help from his friends, since 1 a.m. Cardiology and Neurosurgery finally came together this morning to chart a course. He will be taken to cat scan today and have dye injected into his i.v.s that will travel throughout the "plumbing". It seems we're down to two, his brain bleed or his heart plumbing, that are causing his problems. The ICU team will still be on the lookout for other causes, such as infections of his various systems. We will let you as we find out more from the cat scan. In the meantime, we're glad: for his sleep, Joey's independence, wireless internet, caffeine and for your beautiful, beautiful words.

much love,
jen

diagnoses of exclusion

it's kind of like a process of elimination, only less simple.... it's been a difficult afternoon here, and we're not quite sure what's going on. i suppose that theme has been developing since wednesday, but the frustration with not knowing is now running alongside some worsening of isaiah's condition. when he is awake, he is very agitated. when he's agitated, his blood pressure rises to unacceptable levels, so with reluctance, we've been sedating him more. as we wait for one of the medical services to step up and claim his issues as a result of a failure in the system in which they specialize in, we can see each of their points when they say that, based on the data, their system isn't failing. but something is wrong. so the process basically involves keeping him comfortable and waiting to see if there is an infection lurking somewhere- and things are excluded along the way. but nothing gets excluded to the point of being off the table. our fear tonight is that it's his cardiac plumbing- which may just not be good enough to tolerate everything that is happening. stay tuned, if you want. no one on this end is going to blame anyone on that end if they want to look away. we'll keep posting.

the lay of the land, the map of isaiah

lay of the land: many times this week i have sat before this computer, fingers poised, as the words tumbled over one another inside my head, as they do even now. these things i encounter this week, i have known before, and will forget again. that sometimes there are no answers however much i may believe there should be, that however much you love another you will never truly have the same experience, be it the taste of vanilla ice cream or the vision of your child mid-seizure. many times this week, i have been thankful for the ability to read, as i commune separately together with joe on the completion of crossword puzzles, gratefully read rilke's intuitive words on the great and terrible, the abundant beauty of life and find in barbara ehrenreich's words regarding the cult of positivity a sense that in my times of rage i am not alone. all week i have been asking questions, non-stop, of everyone, because they occur to me, because i am interested, because i feared slipping into a puddle on the floor if i stopped asking. yesterday, i stopped asking. and i slipped into a puddle on the floor of ronald mcdonald house. but as water must, i rose from the puddle, and remembered again that it is good for me to let go, just as surely as i will go through the cycle again and again, though i hope each time the distance between the forgetting and the knowing will shorten.
map of isaiah: today mary beth (our good friend and isaiah's longtime and talented icu nurse) admitted that isaiah has truly thrown her and the doctors for a loop this time. this is not something mary beth has ever said before. there are good reasons. neurologically, isaiah has answered a few questions about his age and colors of objects. this is promising, though he needs to be fully awake before a full sense of his capacity is achieved. his blood pressure continues to be high for unknown reasons, causing him to be dusky blue and mottled. he was started on a sedation drip, bringing his iv meds to twelve, to see if that would bring his pressures down, but more was added as he becomes more agitated. it didn't, so they increased his diuretic to try and get rid of the extra two liters of fluid the little guy is carrying, to see if that brings it down. This in turn, lowers all his electrolytes, which can effect his heart/brain function, so they're trying to rectify that. His liver numbers, including the factors that affect blood clotting, continue to be off which has led to severe bruising all along his back and blood pooling behind his intestines, which has caused his stomach and intestines to stop working for the time being. he has had blood, etc. cultures sent daily as he continues to spike fevers without a clearly visible reason, though it is postulated that the blood in his brain and/or intestines could lead to infection. he's currently on three antibiotics, though he continues to spike through these. thankfully, we added some a second sedative to the mix today, which is allowing him for the first time to rest without agitation. he continues to be trached and on the ventilator, and is dropping his oxygen levels when he's off of it, so though i laughingly tried to tell the docs the trach/vent life is not my life anymore, it does seem that he needs it. he's itching severely due to the pain meds, so they started him on benadryl, which he had an allergic reaction to before they switched him to a different anti-itch med. the seven services, and growing, that see him each have their own priorities, and they don't necessarily mesh throughout the day. perhaps you can see why i puddled on a saturday afternoon, why, though excited by isaiah's signing yellow in response to a question, i am not yet allowed into the cult of positivity.
thanks to all of you, known and unknown, who hold my spot.