It has gotten progressively warmer all week and was officially hot today. The nights have been cool, and perfect sleeping weather. But we're finally into summer, and I get nervous about that. We can't seem to keep Bo out of the hospital more than a year at a time, and he invariably ends up inpatient in the summers. Which is great, because there are fewer respiratory infections, but is less great, because all the residents are brand-spankin new.
Anyway, I'm hoping we can forgo the annual admission this year. But Bo got completely wilted yesterday from being out in the heat, and today, our outing was a walk around the block. When he gets too hot, he will get dehydrated enough to become nauseous and vomit. He gets frighteningly pale and lethargic. And nobody likes that. Thankfully, the fluid bolus we started giving a few months ago has kept his excruciating thirst and dehydration at bay, but it may get hotter yet, this summer.
His biannual visit to the nephrology team in Detroit was great. Two years after stopping the kidney stone medication, he remains stone-free (yay!!). And they are suggesting changes to his TPN that may alleviate some of the thirst issues (too much sodium; it had been jacked up from his last bout of dehydration and never inched down, as his blood levels remained stable, but urine levels started to rise as he recovered, but wasn't getting those scrutinized as frequently). Once the appropriate sodium levels are determined, Bo's remaining thirst (if any) can be addressed by further volume added to his midday bolus.
Since everyone woke up early this morning, we actually made it to the earlier Mass. The play room was open, but there were no scheduled activities, which meant Bo had free reign of the giant toy box. I tried to dump both kids with JVC, but Ahnnie totally melted down, so I took her into Mass with me and she was surprisingly good! Aside from saying "all done" and bolting to the doors right before Communion, she was totally sweet (and silent!).
Summers are so incredibly luscious, here, they really are like vacations. I am feeling completely rested (can I have an amen for date night? We haven't had them in a while due to nursing personnel changes, and boy did I miss them), and even with the trauma of re-carpeting the basement from sewer back-up (entirely our fault forgetting annual roto-rooter), and planning the 5 and 2 year birthdays coming up shortly, I am just so grateful for our friends in deed (Paul!!).
May you experience the Joy and Love infused in this very Life.
Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Sunday, May 20, 2012
Tuesday, May 15, 2012
Regular People Angst
The today litany, gateway to tomorrow, paralyzed me. I wasn't the deer in the headlights. I was the headlights.
And when all the little people fell sweetly asleep, grimy and contented, I remembered.
Until my fist clenched at my purse, screaming something angry about scarcity, as I softly ascertained after-hours plumbers' fees. I wanted to call my mom. My heart, gripped, constrained. tight tight tight. My brain scans for an answer. I feel a dull ache. I try to think about the end of the Easter season.
I will prepare documents for hand-delivery tomorrow before jury duty. Contentment glows from upstairs. The sun kept shining.
And when all the little people fell sweetly asleep, grimy and contented, I remembered.
Until my fist clenched at my purse, screaming something angry about scarcity, as I softly ascertained after-hours plumbers' fees. I wanted to call my mom. My heart, gripped, constrained. tight tight tight. My brain scans for an answer. I feel a dull ache. I try to think about the end of the Easter season.
I will prepare documents for hand-delivery tomorrow before jury duty. Contentment glows from upstairs. The sun kept shining.
Sunday, May 13, 2012
You don't mind if we stop over, do you?
I don't think anyone ever gets used to us. Even I don't. My friend/neighbor who is like a dad to me looks at the pile of "stuff for our trip" and is incredulous.
"I can go 2 months with a small duffel," he slurs. He's like a dad to me. No. Not the one I always wanted. An old guy who comes over and says inappropriate things.
"I can too, without these hooligans and all their stuff. What do you suggest? Wiping their butts with paper napkins from McDs? Improvised TPN with Mountain Dew? They do look the same."
He back pedals just enough to not look idiot. We finish packing and go. Then we get to our destination, and the hurriedly masked look of horror on our hostesses face leads me to the conclusion that my fearless co-pilot did not warn them that: we're moving in.
I know it's just 4 nights. But the mini-van is packed tight, front to back, top to bottom. It's almost as dense as the end of the school year and moving back home with all your shite.
And these are the Mother's Day gifts that I will cherish I'm guessing into my amnesia filled alzeimery old age: the nephrology fellow's follow-up phone call to tell me that we aren't just "good keeping up with Bo," but "damn good;" being invited back by the friends whose house we invaded and fully took over; seeing the heartwrenching creatives from CCS and their new digs (I did cry at the fine arts exhibit: they may not always have the most sophisticated ideas, they _are_ mostly around 21/22, give em a break), but they have been trained to the most rigorous level of complete execution (polished, dazzling and layered); and the glee my maniacs expressed on our return to our gingerbread house on top of the rainbow, next to the herd of unicorns.
Love to all the mommas out there. May your maniacs sleep in. May your spouses allow your craigslisting to go uncommented upon. May your new HE washer/dryer set's happy chime send a thrill down your spine (no, I still don't cook, but I DO love my new set). May you all wake up to fight another day.
I love you all.
"I can go 2 months with a small duffel," he slurs. He's like a dad to me. No. Not the one I always wanted. An old guy who comes over and says inappropriate things.
"I can too, without these hooligans and all their stuff. What do you suggest? Wiping their butts with paper napkins from McDs? Improvised TPN with Mountain Dew? They do look the same."
He back pedals just enough to not look idiot. We finish packing and go. Then we get to our destination, and the hurriedly masked look of horror on our hostesses face leads me to the conclusion that my fearless co-pilot did not warn them that: we're moving in.
I know it's just 4 nights. But the mini-van is packed tight, front to back, top to bottom. It's almost as dense as the end of the school year and moving back home with all your shite.
And these are the Mother's Day gifts that I will cherish I'm guessing into my amnesia filled alzeimery old age: the nephrology fellow's follow-up phone call to tell me that we aren't just "good keeping up with Bo," but "damn good;" being invited back by the friends whose house we invaded and fully took over; seeing the heartwrenching creatives from CCS and their new digs (I did cry at the fine arts exhibit: they may not always have the most sophisticated ideas, they _are_ mostly around 21/22, give em a break), but they have been trained to the most rigorous level of complete execution (polished, dazzling and layered); and the glee my maniacs expressed on our return to our gingerbread house on top of the rainbow, next to the herd of unicorns.
Love to all the mommas out there. May your maniacs sleep in. May your spouses allow your craigslisting to go uncommented upon. May your new HE washer/dryer set's happy chime send a thrill down your spine (no, I still don't cook, but I DO love my new set). May you all wake up to fight another day.
I love you all.
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