Friday, September 28, 2012

Beneath the Surface

Beneath the surface of our outwardly typical boy is an epic battle between microbes in the wrong place and poison. He plays, sleeps, reads. He has his antibiotics at 7AM and 7PM.

Beneath the surface of my constant-motion, we decided to switch rooms between the children. Bo would get the larger room and we would move his medical preparation and storage stations into his bedroom. As the furniture moved back and forth, I felt happy and satisfied that it was going smoothly. But when I saw the desk with all his supplies in his room, I cracked. I wasn't ready. Wasn't ready for him to stop napping entirely. Wasn't ready for his supplies to NOT be in our room. Wasn't ready for him to see all the things and all the time that goes into his every-day ho-hum.

I know he knows that TPN is a different way of "eating." I know he knows this. I know he sees his IV pole every day. That he drags his backpack around. That he has to wait for us to hook-up and un-hook his IVs. I know. I know this. But I can't. I can't bear the idea of this little human seeing a table piled with equipment and supplies, several-times his size in volume. This mountain of medical- the first thing he sees every day? These things, dominating his space, dominating the landscape of his little boy's room.

I think I just need a storage unit that obscures these things from view. And a glass of wine. Or three.

Happy Fried- Day. Uh, yeah.

Wednesday, September 26, 2012

Re-entry's a Lady Dog (as our sitter would say)

The wedding was fabulous. The vacation day was well-spent. The visiting with family given and chosen was tremendous.

We're all a little fried from the travel, but everyone had so much fun. These kinds of calculated risks will always be worth it. And now, I get to drive into the weakly breaking dawn.

I'm thinking we may need to start taking Bo to OT; he just can't seem to figure out a way to protect his hands when he falls, but also protect his head. Man, he has got this enormous goose egg on his forehead that is turning 50 shades of bruise, and has spread a little to his eyes. Imagine the most doleful furless raccoon and you just might get the picture.

Have a magical day, everyone!

Thursday, September 20, 2012

my kinda town!!!

We are about to go to Chicago for a wedding. Bo will be on antibiotics for foreseeable future (read: 4 weeks). It's good, because his docs take this seriously and want to knock these bugs out for good. It's bad, because it's an infection that persisted through a 7-day course of treatment. But it's good, because the travel is less scary, since he's on antibiotics :)

And it's really good because it's the wedding of Bo's Godfather, one of my besties from college. We always joke that we are thisclose because we are almost the same person. Our birthdays are only 3 days apart, and now our wedding anniversaries will be only a day different.

The joy, hope, love and gratitude I am feeling may be the euphoria of sleep deprivation, or near-death, or simply relief of twice daily antibiotics instead of 4 times. Perhaps it is the anticipation of being in the same room with my chosen family who are so dear to me, who have supported me and my little family so long. Maybe it the glee of living such a rich life, despite, but with so much struggle; and finally realizing that we all have struggles- just with different names (MID, dad with alzeimers, best friend with cancer, sister with infertility, the list goes on), but that those struggles make our friendships that much more precious, that this life becomes highlighted in the light of the golden hour for much longer than an hour.

Bo's line infection happened at the same time as the final stages of my ANDA, my first. The same time my niece came to Michigan. The same time kindergarten started.

But life does not wait. And life happens. And we just carry on, because the alternative, or any of the alternatives, do not leave us better off.

And so, I spent the day polishing my 3000+ page document (I am not exaggerating: 12 three-inch 3-ring binders, full), rocking out to boy band singles, wishing I _was_ a boy band (I don't wish I was a boy, or a popstar, or in a boy band, I just had this overwhelming wish to be the entire boy band). And then thinking, if I was a Bollywood movie, that would be an easily acceptable substitute. Then thinking, I have a fighting chance of having this damn thing in good enough shape that I just _might_ get permission to take Monday off.

Two line infections in 5 years is a pretty good track record. 2 central lines in the same amount of time (and the 1st was only lost due to out-growing it) adds to our confidence that we have pretty good technique. But none of that takes away the fact that we live thisclose to the other side. And then again, who doesn't?

So we carry on. And remain grateful for all that we have. Reliable TPN deliveries. Washers and dryers. Good employment. A leafy neighborhood, and great public school. Books old and new. Friends, baby friends and baby frenemies. Family and hanai family. Beginnings, endings, love and endurance.

Let's get married!
I love you, snuggle down!

Saturday, September 8, 2012


At the last minute, angels swept in, did the blood draw the midnight before school started, and Bo walked into school with all the other kindergarteners. I cried. I did not think I would, I'm sure my cry was very different from other parents', but I did, I cried. To see the school district's head nurse, Bo's schoolroom nurse, our good friend (also a nurse), and Bo. It was overwhelming to see and feel so much support. So many people who helped in so many ways, both visible and invisible, to achieve something that so many said was impossible.

And today, the first weekend after the first week of school, Bo's infection is officially clear. I am back to laundry and facebook. Bo is back to Lego's and libraries. We are as back to normal as we will ever get.

I have deadlines, and surprises at work. Jose has plans and art to create. Ahn has yogurt and rice to splatter across the house.

We get another tomorrow, together.

Monday, September 3, 2012


Vancomycin levels were lower than the surgeon wanted, so the pharmacy will compound new doses and deliver tonight. Instead of  the 1st day of kindergarten, Bo will get to go to the hospital for a blood draw. The laboratory studies from this will: ascertain that the new level of antibiotics are strong enough to kill the bacteria (and not Bo), that the other components of his blood are stable, and that there are no longer pathogens living in his circulatory system. I guess that is a little more important than standing in line for the bell to go inside.

Saturday, September 1, 2012

First the Pinch

As you apply pressure with the needle, first there's the pinch, then the tug.

The stitches. Each pinch remains a surprise, in its inevitability, in its staccato repetition. With multiples of these filigrees, suddenly these ephemeral wisps bind together with a certainty.

Bo is on the 2nd day of a (hopefully) 7 day course of IV antibiotic treatment for the 1st confirmed line infection since starting Omegaven. He had one before. While I know this is a VERY low rate of infection compared to what the literature suggests, it is no less life-threatening.

So before your freak-out. Remember, we live this every day. The very real and imminent threat, and the very normal. Bo, for better or worse, is acting well and has no obvious signs of illness. No fever, no lethargy, no real change in demeanor. Something was a little off, and we had cultures run. As it turns out, he has MRSA(!). But it is currently vancomycin resistant, and we are hoping that the vanco does the trick.

Last week Bo was in a fashion show with 2 of his surgeon's kids. I stayed home with Ahn, who was napping. But we had not seen Dr. L since Bo's last line breakage over a year ago. And as it happens, Jose was able to chat with Dr. L as another dad at the Chalk the Walk. Then a few days later, we are asking him to allow us to treat a line infection from home, call the infusion company at 4:45pm on the Thursday of a long weekend.

Between his antibiotics and his TPN, he still has a 4 hour window of unconnected time. Which is exactly as long as the kindergarten day lasts. So he will start school on Wednesday. Hopefully he will finish his antibiotics on Thursday.

We were disappointed to learn that labs must be run on Sunday, cutting short any plans to visit my family across the state for the long weekend.

But we will be able to go to a friend's 5th birthday party, visit some friends at their lakehouse, and maybe even go to the local Pow Wow.