08 Jan Mercy, Monday
Posted at 03:56h
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by admin
Mercy. I plead mercy from this Monday. Thankfully, it’s almost over.
The first Monday “back to business” after a holiday is never smooth. Get the kids up earlier than they had been getting up over the break (oh so happy). Give Keegan his 10 morning g-tube medications and 1 IV medication. Get both kids dressed. Rush them through breakfast. Rush Audrey to school. Criss-cross town to Keegan’s speech therapy appointment. Back to the house for ABA therapy. Yadda yadda yadda.
The day started going wrong too soon. Second medication in blocked his g-button up like a cork. Meds exploded on me, the carpet, Keegan. Had to cancel Keegan’s speech therapy in lieu of an emergency button replacement so he could receive his time-sensitive medications. Truncated story…it was replaced, and we were back home ready for ABA therapy.
The pre-medication we gave Keegan to help him chill out during the button replacement (remember, taking his button out is kind of like taking a giant earring out that extends from outside his belly all the way into his stomach) made him a little loopier than usual, for longer than usual. He got a little off-balance during an exciting VeggieTales DVD, and this happened:
Boy meets coffee table.
I’m sure it will look even better tomorrow.
He was extremely emotional the rest of the day. My mom picked up Audrey at 4pm to watch her overnight since we have to be at the hospital super early in the morning. I still hadn’t been to the grocery store for basic needs. I came home a little after 5:30pm to find Keegan asleep on the couch. His nurse said he basically cried himself to sleep. This wouldn’t be a problem, except that Keegan does NOT nap when he feels well. Ever. Emotional wreck + excessive sleepiness usually = flare. We don’t think it is a concussion based on how low the impact was on his face. I’ve already spoken with the transplant team, and they are going to take some MAS labs onto the rest of his labs for tomorrow.
Which brings me to tomorrow…Keegan’s annual transplant work-up with heart catheterization, angiogram, and biopsy to check for rejection. Echo, EKG, x-ray, and labs too. It usually would be around mid-September, on the anniversary of his transplant. However, we pushed it back last year since he was in the ICU in Boston on his transplant anniversary. From now on, it will remain in January unless something else pushes it back again.
So, if you could say a few prayers for Keegan’s safety and a good report tomorrow, we would appreciate it. It will be a long day, and after today, that’s going to be asking a lot. We will update tomorrow as we know more. Thank you once again!
And now, Mama needs some wine! 😉
