In the Shadow of Bo

Another mom mentioned in her blog that the social worker warned her that some people in your life would withdraw from you when you suddenly find yourself with a special needs child. Another friend, who's currently fighting cancer said something similar about how some of the people closest to you suddenly disappear when you are in crisis, and some folks who might have only been acquaintances become your most indispensible companions. I've been thinking about this a lot. And grieving. I keep circling back to my last communication with my oldest (former) friend in town...

Dear Kinn,
We are really shocked and saddened to hear about this, I had no idea this happened to your family. Wife2 and I will be keeping you in our thoughts.
Buddy

RE: what's new?

Hey Buddy,
Did you go see Punisher when she was in town? I guess you haven’t heard about Bo.

So, when Bo was born in June, he was dehydrating very badly and not regaining his birth weight. He was kept in the NICU for 3 weeks, but the neonatologists couldn’t figure out what was wrong with him. So then he was transferred to the University of Michigan via ambulance, where he stayed for an additional 2 weeks. It turns out that he has an incredibly rare and life-limiting condition known as microvillous inclusion disease. Basically, he doesn’t have enough surface area in his intestines to absorb enough nutrients to live. UM docs said that he had a 25% chance of making it to 1, and <1%>

... I would trade this friend for Bo a million times over, if that is what the equation asks for. But does it? I am so sad about this loss. And so grateful for Bo. My heart still has this echoing ache when I look at Bo and think about how different my life is, the people I've lost, the goals I've modified, the empty space in my heart this friend used to live in. I am living "a life less ordinary." And now I really know what that phrase means, too. Bo has given me so much; all the world, a new life, hope, courage, friendship and joy.

Only, sometimes, breaking away from the old world into the new is just such a painful transition. And the surprising sources we find our sacrifices originate from can catch you off guard. These things all fall under the shadow of Bo. It is a little disorienting, a little lonely, a little scary... and then, this sunburst of abundance settles into your heart.

And there but for the grace of God go we.

Appetite returns with a vengance

I'm happy to report that Bo's appetite has returned with a vengance. Also, aside from the last stone, the nephrologist says that his renal system looks completely normal. His GI was delighted by his weight gain and big smiles and babbling so much so that we are increasing his volume (to ward off more stone formation) and decreasing his time on TPN.

Boo Boo was completely lovely and cheerful through both doctor visits and didn't even cry on the way home, even though he'd only had one nap. What a good boy!

Once we get the stone analysis and one more urine analysis, the GI will know how to adapt his TPN to avoid further stones. He weighed in at 16.25 lbs and 25.5 inches!

Near Miss

Bouncing from terror and devastation to relief and exhaustion, we spent the better part of Saturday at the emergency department, prepared for at least one over-night stay. Bo was inconsolable Friday night and I was finally convinced that he was passing a second kidney stone. He was in agony; much worse than the first stone even though that thing was 3x bigger, at least it was round.

I prayed. I cried. I tried not to hear his screaming and whimpering. My feet were searing hot with panic. I was exhausted, but only experiencing a fraction of the discomfort of this poor little baby.
I was so out of my mind in the week working up to this night, as Bo had not been able to keep anything down, and was gagging and retching each night. I threatened to get rid of Murray cat, that's how insane I was getting.

We found an arrowhead shaped stone in his morning diaper. I thought that would be the end of his discomfort, but he spiked a fever, who knows why, and it was off to emergency.

It is no secret that parents of special needs kids suffer a much higher rate of: divorce, depression, and substance abuse. All I wanted upon our return home was a stiff drink. Especially since the ultrasound showed at least one more stone he will have to pass. February has been pretty rough for Bo. Jose and I have had our share of sleepless nights, but it is not hard to remind myself that he is the one in pain. I'm just relieved we haven't had to stay at the hospital and expose him to all the MRSA, flu and infectious diseases floating around this time of year.

He slept 13 hours straight last night, had a 2.5 hour morning nap, and is currently 1.5 hours into an afternoon nap. Hopefully all this sleep will help him recover from a thoroughly exhausting week. And while I am grateful to avoid being in-patient so far for the month of February, passing two stones in one month is hardly what I consider a break.

Lunar Eclipse Madness

Bo has been acting annoyed and whiney all day. He only took a few very short naps (read: not enough day-time sleep), and then yelped out each time I put him down (that would be 4 times) for the night. Usually he has 3.5-4 solid hours of napping during the day, and goes down like a box of rocks by bedtime (under 10 minutes of soothing between 6:15pm and 7pm).

I realized that the source of all this angst is the extra darkness from the total lunar eclipse. He thinks wolves will sneak into the house and spirit him away, and that they will get away with it under cover of the extra darkness. Thankfully, these lunar events only happen every 3 years.

PS the wolves did not make it into the house

Debunking the Parenting Myth: not really reading it

It's only been a few short months since Mr. Squishy was born (thanks, nanimal!), but it seem like... well, I can't tell you what the last eight months were like, because I hardly remember.

And I feel like a heel, but to those of you I haven't spoken to since before the baby was born, I really do miss you, I might even be mad that I haven't heard from you, but I also can't remember the last time I tried calling someone (I'm changing a diaper/putting him down/waiting for him to wake/preparing a bottle/too tired to find my phone/found my phone and it's now midnight). So we can call it even. Except now, I have memorized the content of 30+ board books and have started improvising. I can change a diaper in complete darkness, as well as hook the baby up to his IV under the same circumstances.

He tried his second solid food today, avocado! And had his Omegaven bumped up. His TPN calories will get a bump tomorrow, and we will get a new weight/height measurement next week. None of the doctors seem overly concerned about the stone, as unusual as it is. But we will plan on getting an ultrasound done soon (maybe in March) to see if there are more to expect.

The Crucible, the lesser

We were up all night, Wednesday night, with Bo. He was so exhausted he would fall asleep between gagging episodes. It reminded me of labor, and getting micro-naps between contractions.

He was not feeling well to say the least. We thought he had picked up a virus, and were hoping this was the end of it. It had all started on Friday night, when we got out of the car at the Hyatt on Wacker and he promptly threw-up on Auntie Jennie. His temperature went up a little, to 99.7F, but by 10AM Saturday, it was back to normal. Doc Cloney, Nurse Kathy and my gut told me that this was not something the hospital would be able to help with. It certainly didn't have the high temperature indicative of the dreaded line infection.

So the gagging, retching and small-volume vomiting went on through the weekend and ended Thursday morning. What we found in his diaper explained it all. A stone. He was passing a kidney stone that would have felled a large man. The nurse in the pediatrician's office didn't believe me, saying, "he would have been inconsolable." But we already know that this is a very unusual person we are talking about.

I had thought of my belly as The Crucible. It seemed a clever reference at the time. Little did I know. Or maybe my intuitive mother-self knew. We saved the stone, hoping to get an analysis of the thing. And Bo has been so lovely through all this. Each day, during the day, he acted as if there was nothing amiss. And now, two short days after the stone was expelled, he is in high spirits. What a guy!

A Day in the Life of Bo's Care: not for the faint of heart

Where are his teeth? Does he need a diaper change? When, and how long was his last nap? These standard baby questions are sprinkled through the day along with more specialized care questions like: did you call the pharmacist to ask for more fluids? did Nurse Kathy call with today's lab results? what did the pediatrician's office say about giving him an oral vaccine? does he need a dressing change today?

Above, a new dressing on the catheter that goes through his subclavian vein into the jugular that feeds right into the heart. Bo's Omegaven and TPN (all his nutritional needs) get pumped into his body through this "line" into his heart, and to all the cells in his body.

Below is a description of all the stuff we do for Bo on any given day. In the medical/insurance world, this is called a "24-hour plan of care," and must be incredibly detailed. Also, this list is to try and convince the audience (insurance) that we need more nursing care in the home.

And while this list seems daunting, the reality is that the biggest problem we are having is keeping him from getting bored during the day. The weather is too cold and snowy for our daily walkies anymore. So he ends up getting toted around a lot. He probably has a few more diapers than his peers, and they're probably bigger diapers, and you have to sling his TPN backpack over one shoulder for the morning, but taking care of him during the day is probably not that different from any other baby in most other ways. And he sleeps through the night, so after, say 7pm, it's all grown-up time.

• 6:15-7:15pm aseptic connections for tubing set-up (this is also done if his line ends up on a pool of excrement in the morning, requiring stopping the pumps and re-spiking the bags with new aseptically connected lines as an infection prevention measure)
• 7-7:05am aseptically flush lipid (Omegaven) line with saline
• 3-3:05pm aseptically flush and heparin lock Broviac (CVL)
• hourly (24hrs) monitor input and output for dehydration (typically 4-7 watery and explosive defecations, 6-7 urine output)
• every 4-5hrs (24hrs) monitor temperature 3-4x for elevated temperature as an indication of infection
• 24hrs monitoring and adjusting lines for security and to prevent CVL breakage/removal
• 24hrs monitoring skin pallor for jaundice as indication of return of cholestasis
• 24hrs administer IV antibiotics and fluids as needed
• weekly measure weight, length and head circumference to ensure proper nutrition compounded in TPN
• several hours a day, daily maintain sterile technique, and a clean environment conducive to aseptic line construction
• 6:30-7am clean bedding from fecal matter to prevent line infection
• weekly/as needed perform cap changes with sterile technique
• weekly/as needed perform CVL site dressing changes using sterile technique; this can be done more frequently if the dressing detaches itself from the child before the week is up, if it becomes soiled with vomit or other moisture, or if the catheter loop has been pulled out.
• 5-5:45pm bathe infant with CVL
• every 4-5hrs (24hrs) monitor skin integrity and CVL entry site for discharge, discoloration and patency monitor skin integrity of diaper area for dermatitis (he is at high risk for this due to excessive, watery, and explosive diarrhea)
• 24hrs constant vigilence 24-hour supervision for 20-hr TPN cycle and 12-hr lipid cycle; monitor line integrity
• 7:15-8:30am, 10:30am-1pm, 3-5pm developmental play to achieve age-appropriate milestones: OT/PT/speech therapy
• 7:05-7:30am, 12:30-1pm, 6-6:30pm express milk into bottles, label and freeze milk, wash and sterilize pump parts
• 7:30-7:45am, 1-1:15pm, 6:30-6:45pm- nurse for comfort and to maintain oral-motor development
• 5:45-6:15pm monitor and manage medical supplies: stocking, receiving and re-ordering1-5hrs, daily, depending on whether Bo is in-patient, and other variables medical communication management: pediatrician, GI specialist, visiting nurse, EarlyOn, Great Start, home infusion company pharmacist, primary insurance case manager, secondary insurance case manager, hospital staff (as needed)
• 24hrs constant vigilence monitor pumps and adjust as needed with alarm

The only meds Bo is currently on are his TPN and Omegaven. When he has a line infection, the antibiotic and dosage is determined by the microbiology results. For instance, his last (and only, knock wood) line infection required a Vancomycin dose of 50cc @ 1cc/hr. This was administered Q6 for 10 days. The schedule was grueling and was like so:

• 5am- take antibiotic out of refrigerator to achieve room temperature by time of administration
• 5:30-6am- aseptically assemble tubing and additional pump for antibiotic administration
• 6-7am- aseptically flush 3rd lumen of triple splitter, clamp the Omegaven line and stop its pump (as its compatability with anything has not been studied), administer antibiotic
• 7-7:10am- stop the antibiotic pump, flush that third lumen again, re-start Omegaven pump
• rinse, lather, repeat 11am-1:10pm, 5:30-7:10pm, and 11pm-1:10am... for 10 days.

It should be noted that monitoring diaper area during this course, and for the week following must be incredibly diligent, as the natural microflora of the skin is also disrupted and often results in yeast blooms in that area when the normal bacteria are destroyed. Break-down of skin, red bumps, rash, raised plaques, etc. Often we will use prescription diaper cream with miconozole prophylactically during and for 5 days after antibiotic treatment to prevent diaper rash from occuring. This must be administered at each diaper change (7-10x/daily). Then, when he had pink eye, the procedure require eye drops administered 4x/day for 7 days:7-7:10am- dose both eyes with 2 drops each, and again at 11am, 3pm, and 7pm.

Additionally, because of his excessive, watery and explosive diahrrea, in the mornings, after we clean his bed, change his clothes and give him a new diaper, we have to monitor his penis for engorgement with puss and discharge, which may be a precursor to a urinary tract infection. This requires pulling back the foreskin, inspecting for redness or discharge, squeezing the penis and inspecting for discharge, and monitoring for swelling or redness in the penis. This last step is performed at every diaper change.

Bo Takes Chicago

Bo models his SuperHero Frubi's in anticipation of sunnier days.

Our first non-medical trip was a great success. Bo was an inspiring addition to the Oley Foundation's regional conference, he crashed the APSPEN professional conference, and attended a GSB alumni brunch! He did have a virus that made him gag and retch with nausea (and his mommie very anxious) at night, and we drove home in a white-out, but we got home in time to hook him up, and we even got to squeeze in a visit with his favorite docs from Boston, Drs Gura and Puder! They agree with Nurse Kathy that Doc Cloney is doing a fine job with his weight; not too skinny, not bloated with TPN. And he even said Puder! Well, it came out as, "puh-puh-puh." But he has the right idea.

Once again, Tio Ren and Auntie Jennie provided invaluable help getting us both settled in and packed up, as well as general Bo-duty.

Medical update: He weighed in this morning at 14.78lbs, and his labs have been reduced from weekly to biweekly! I have mixed feelings about this, as we love being able to consult with our rockin' visiting nurse weekly, but the reduction of draws means a reduction of opportunity for his line to get contaminated, and it also means that his GI thinks he's stable enough to not need to see weekly lab data.

Kinn's Computer's Current Wallpaper

I love this picture. What is he thinking, with that doleful look on his face? He's covered in rice cereal, and we had to take a break because he was too darned cute not to photograph. I'll close all my windows in the middle of the day, just to look at my wallpaper, this picture, and I just fill up with so much love at the sight of him.

I am of two minds when I think of Bo's medical condition. On the one hand, I am so baffled by the rarity of his disease. It is so rare, that its pathology is still completely a mystery to the medical community. On the other hand, the pediatric gastroenterology conditions that would have led us to Omegaven that are better defined can often be much more severe. At the end of the day, I remain grateful that his intestinal microvilli are the only things affected. He is not on a ventilator, he does not have seizures, his other organs work great. It is a funny thing to be grateful for, but in the community of parents of special needs kids, I am finding out that we are as lucky as we feel tonight, and every night.

Did I really harbor such shallow thoughts as material envy, or vanity? The only thing I find I am envious of anymore are the parents whose kids become TPN-independent. The perfect physique of my yoga teacher or personal trainer no longer give me pangs. That perfectly turned out contemporary of mine at the market no longer causes me to catch my reflection in the door of the milk aisle with remorse. The gorgeous engagement ring on the chemist's hand doesn't embarrass me with lust, anymore. The guy at work, less educated but better compensated, doesn't even get a second thought. But the blogs of babies who are decreasing their nights of TPN makes my eyes sting with tears of jealousy. I'm not phased by normally developing children or their parents. They're in another world, not pertinent to mine and Bo's. But these short gut kids whose intestines miraculously adapt... my eyes are brimming with jealous tears, right now, as I type... even as I cheer them on, these brave, stalwart babies, and their brave, stalwart parents. And my first day of the new year, I am exercising my unpracticed art of forgiveness, clumsily, awkwardly, with love, and the grace of God.

And still, like every other night for the past eight months, we gleefully toast each other to another great day with our best friend, Bo. And finally, I understand in my heart, the notion of "there, but for the grace of God, go we."

Calling All Grammas

He was screeching when Gramma Maggie came to visit today. Pictured left: before he learned to screech, during a visit with Granny Holmes. I hope Bo's apparent rudeness didn't scare Gramma M away for another month! He does love him his grandmas, he just also loves to talk loudly (yes, a Chan, we know).

Also, I've been madly weeding out all the scary-toxic baby products in the house. Who knew this stuff was toxic?! http://cosmeticsdatabase.com/browse.php?maincat=babycare&nothanks=1

yikes. I am that crazy mommie.

Long Life Noodles

We are so excited for the New Year. We will be taking our first non-medical trip this New Year Weekend to Chicago to participate in the regional Oley foundation meeting. Hopefully we will learn new things about Bo's care.

And the icing on the cake is that his Omegaven doc and pharmacist will be there!

By the way, we made it through the month of January without having to be admitted to the hospital! January and November. I can't wait for the day when the hospital-free months out number the other ones.