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.

Reflections on the Year of the Pig

As the Chinese Lunar New Year approaches, I have been reflecting on the last year and all the miracles we have witnessed, along with all the forgiving I need to prepare to do to clear my emotional register for the new year. Forgiving myself for being too hard on us for not being perfect. Forgiving of the U of M doctors for operating from a place of sobriety due to experience, instead of soaring hope (what we needed). Forgiving of Bo for being so cute that we are spoiling him out of control. Forgiving of Murray the Cat for getting sick amidst all the Bo frenzy.

Now that Bo is stable and developing, it is hard to remember how terrifying it was walking into the NICU every morning those first few weeks. Wondering if he would still be in his crib, or if his room would be empty. Wondering if we would still have a need for the carseat sitting empty in our back seat, and how I would have the strength to remove it, if I no longer had a Bo to seat in it. Wondering who else would have the strength to pack up all the baby gifts and clothes and furniture, because I knew if it came to that, I wouldn't. Those were the longest, darkest nights. And I know our stays in the hospital are far from over, but none will contain the mind-crushing terror of those mornings.

I am so grateful to have Bo with us for another amazing day. I am so grateful that we had those mornings to remind me to be grateful. I am grateful I never had to take the carseat out, or find someone to pack the nursery. And grateful it was only 5 weeks in the hospital and not 5 months, like a lot of other short gut kids, or 5 years, like the older MVID kids. And as I pray that Bo does not develop additional pathologies, I am still grateful for these last eight months. And I know that now I do have the strength to face the future, whatever darkness or sweetness the days ahead hold for us.

I just cover his big chubby head in kisses till it stinks from my saliva. I kiss and smooch and blow raspberries until he yells. And I noticed I only just started doing this after Christmas. I don't think I really kissed him all that much before then. I think all those terrible nights and terror-filled mornings just made me try to harden my heart. Those early months, we just did not know if he would actually make it to his hundred day birthday, or Christmas, or January 1st, or his first birthday. We are actually planning his first birthday. What a miracle.

Thank you for joining us on this new path that Bo has led us towards. Thanks for reading.

A New Hat! Thanks, Tung!

Although it hasn't made it even close to freezing today, and I had to fight to get into my car because the doors were frozen shut, we had a great day together. Jose built a fire at noon, and Bo and I played tummy time games, sitting up games, and ate cereal.

Bo loves his new hat. My sister in Hawaii made it for him. He looks like a little goblin in it with two puffy ears on top. I had to include a goblin-face expression. We are so lucky to have another great day with our little goblin.

PS thanks for the comments; this love and support helps me be the best mom for Bo, and Bo and I really appreciate it