Bodie had a clinic appointment this morning, with an echo and labs. Thankfully, all continues to look great! He’s gained a little weight and we’re still on track for his 2 month cath and biopsy next Wednesday! Hard to believe next Friday he’ll be 8 weeks post transplant!
I used quotation marks to refer to the “outside” in my title.
Because we are definitely on the outside of the hospital, and for that, we are so incredibly grateful.
But yet we’re also outside of the real world.
While our friends post pictures of lying on sun kissed beaches in tropical destinations, and compare class schedules and go back to school shopping, we’re not quite there yet either.
We’re still very much inside our bubble of transplant recovery.
A world that moves very slowly.
A world that is measured in day by day improvements, no matter how marginal.
A world marked by forced daily walks…
And lots of rest breaks for Pokemon hunting (which Bodie has gotten Dusk hooked on!)…
And watching the local geese…
And seeing new flowers bloom…
And walking by the ocean.
A world revolving around medications and feeds.
So many medications.
Bodie’s currently on 13 medications, only 2 of which he was on when he walked into the hospital last month.
4 of them are twice a day meds. 2 are three times a day. 3 are morning only. 4 are evening only. 1 is afternoon only. 7 are in liquid suspension form already. 1 of those has to be refrigerated and another cannot be exposed to sunlight. 4 of them have to be crushed in syringes and be drawn up with water. 1 med is so big it needs to be crushed in a separate pill crusher before being drawn into the syringe. 1 comes in capsule form only, so has to be opened and sprinkled over a tablespoon of applesauce. 1 has to be poured into a medicine cup and applied with a sponge to the inside of Bodie’s mouth.
In addition to his medications and the meals he eats by mouth, he has 2-3 bolus feeds a day of formula, and 2-3 additional boluses of water, all through his NG tube. His feeds have to be measured out, and have to be preceded and followed by water flushes. The feed bag has to be primed before each feed, and washed out between feeds.
In the midst of all of this, I am tracking his fluid and calorie intake (goals of 2,000ml and 2,700 calories, respectively).
It’s just…a lot. Even for an experienced heart mom and a kid who’s been on meds his entire life, it’s a lot. I have my schedules and apps on my phone, but even so, it’s…just…a…lot.
My fellow transplant moms had warned me, but I had hoped it wouldn’t be such an adjustment for us, since we’ve been at this medically fragile kid thing for over a decade now. Turns out, they were right. It’s been an adjustment.
So while we’re on the outside of the hospital, we’re also still on the outside of regular life. Turns out, the world around you doesn’t stop spinning just because your life has stopped momentarily. I know, I know – how rude, right? But apparently it’s true!
We’ll get back to the inside soon. But for now, we just keep revolving here. Loving on our boy and getting him through this recovery. As he told me last week “You know mom, this has been the worst summer ever…in the short term. But in the long term, it’s going to be the best summer ever.”
Amen, Bodie. Amen.