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On Their Way Posted February 27, 2013 by Jackie Dooley

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Jim and Ana just left for Ana’s second weekly post-op visit at Columbia. They need to get there by about 8:00 a.m., so they probably should’ve left at 5:30 a.m., but you try getting an 11-year-old up at 5:00 in the morning. I packed Ana a lunch in her Planetbox. This is an ingenious invention that makes lunch incredibly easy to make (the girls’ school doesn’t have a cafeteria) while eliminating most of the garbage produced during the lunch-making process (plastic bags, paper bags, etc.)

planetbox1

That’s not Ana’s planetbox – I grabbed that image off the web. The owner of  Planetbox is the sister of our good friend Liz, so when I mentioned that Ana REALLY wanted a Planetbox, Liz told me to have both Ana and Emily pick out the ones they want and her sister would send us a couple for free. It was a much appreciated gift. Both lunchboxes came super fast – the day before Ana’s transplant. She was SO BUMMED she couldn’t use it at school. So, we decided to pack it for the weekly trips to the city. I don’t know why I’m obsessing over this lunchbox. Maybe because I didn’t bring her in today. I really need to work, but I still feel bad because she will likely get her biopsy. So I packed her a lunch and labeled each and every item with its corresponding number of milligrams in sodium – I then wrote her a little note saying that even if she ate every single bite, it was only about 1200 mg of sodium (and I packed a LOT of stuff).

Maybe my obsessive lunch-packing will stave off any bad test results from today’s labs. Maybe she won’t have to get a biopsy because I painstakingly planned out her food choices for the day. Maybe I can control the weather, if I try hard enough. Who knows.  Speaking of weather, I’m worried that Jim and Ana just left in the midst of this sleet and what sounds like ice. Yikes. I hope the roads are clear once they get off the side streets.

So, the day will play out like this. Jim and Ana will hopefully make it to the hospital by about 8. Ana will immediately get her labs drawn (she hates the outpatient phlebotomists. She says they never smile or even make eye contact with her). Then Ana will go up to meet with Dr. Martinez and Maria (the hepatologist and PA). They’ll then likely sit around for a while until the labs come back and, at that time, Dr. Martinez will make the decision to get a biopsy (or not). They do the biopsy if her liver enzymes are elevated. I’m not sure if they will make her wait for the biopsy results or send her home. I suspect it’s possible that if the biopsy shows rejection that’s more severe than they expected, she could be admitted. She could also be admitted if her blood counts are out of whack and they suspect infection. Or she may just get treated there with I.V. something-or-other and sent home. Either way, I think it’s going to be a long day for both of them. But..at least she has my meticulously packed lunch.

I’ll post an update when I know more. One positive sign from yesterday is that Ana’s weight went down another 2 pounds. She was 65.4 lbs yesterday and Sunday she was 67.1. This is another bit of mixed news because while I’m happy that the fluid is going down in her abdomen, I’m kind of freaked out by how skinny she is. I just keep telling myself she’s eating, her skin looks good, she has energy. But she is so painfully thin that she’s literally only a few pounds heavier than Emily at this point.

3 Comments

  • Caroline Miros February 27, 2013 at 5:15 pm

    Hi Jackie – this is Elizabeth’s sister Caroline writing – the PlanetBox lady as I am sometimes called too :-) . It was my total pleasure to send these to you, and I couldn’t be more thrilled to hear that Ana is happy with her new PlanetBox. I hope it can bring a teeny, tiny bit of comfort and structure to what must be such a tumultuous time for you all. My daughters attended Zumba camp with Ana this past summer, and remember her quite well – please know that we are keeping your family in our thoughts and prayers.

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  • Natasha February 27, 2013 at 4:55 pm

    I am so glad that Ana is recovering well:)
    Natasha H.

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  • Erica February 27, 2013 at 7:32 am

    I feel tremendous power in your caregiving, Jackie. Your full, raw emotions directed into personalized Ana-support in every aspect, including sodium counts in what looks like the coolest lunchbox ever. It’s the energy behind what you write, as well as the fascinating and real information that rivets me with every post you share. Hope you get some work done today that feels satisfying and helpfully distracting until Ana’s return. xoxoxo

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