Another manic Monday trying to keep Keegan outpatient.
8:30am - Draw last amount of blood that Cincinnati ordered to be sent to a private lab in Canada for testing. Assuming all the paperwork was ok and that we had done this several times, I ask my mom to drop it off at FedEx after she takes Audrey to school.
8:45am - Audrey off to school. Clean Keegan up and throw some clothes on him after his first bad diaper of the day. Head off to Children's downtown for labs.
9am - Stop at Dunkin Donuts drive through for an extra large coffee + expresso shot. Somehow I knew it would be one of those days. Get on the highway before I realize they put sugar in it. Ahhh! Completely undrinkable. Now I'm starting to feel as drowsy as Keegan is. He's already dozed back off in the back seat, after only being awake for about an hour.
9:45am - At the hospital. Get to clinic. Get labs drawn. Still waiting on a return call from rheumatology (which is down the street at Scottish Rite Hospital; 10 minutes from where I am now & 45 minutes from my house) for a post-hospitalization follow-up. Get a call from my mom saying FedEx by her house wouldn't take a "clinical package"with "biological specimens" (despite the fact that I've sent two such packages from there already), so she is headed to downtown Plano to the main office to drop it off.
10:50am - Still no word from rheum, so I head home with Keegan. My mom calls to say she finally got the blood shipped after filling out a second set of paperwork for out-of-country packages.
11:30am to 12:30pm- Arrive home as the phone rings. Appointment with rheumatology at 1pm. Have an hour before we have to head back downtown. Keegan's second bad diaper of the day. Unload the dishwasher, wash syringes; field phone calls from insurance and return emails. Call my mom & ask her to pick Audrey up from school. Keegan finally eats a small lunch...some of which he proceeds to throw up from the retching he's been doing for weeks now as we are about to run back out the door to Scottish Rite.
1pm - Wake Keegan up from his second nap when we get to Scottish Rite for clinic visit with rheumatology. Spend most of the appointment with Keegan curled up in my lap. Until he has another bad diaper. Stand Keegan up. While trying to wrap up our visit with the doctors, I see his diaper has leaked down his leg, onto his shoe and the floor. Learn that most of Keegan's labs are starting to look better, but we need to slow down even more on the steroid wean. Repeat labs on Friday. Leave the hospital not only defeated by the new steroid wean plan but also the need to take Keegan out of the hospital in nothing but a diaper and tshirt.
3:15pm - Leaving Scottish Rite. Get a call from the transplant team that Keegan's magnesium levels are much too low. He needs an IV mag infusion. Seeing that I need to get Keegan some clothes at home, it will probably be at the Legacy ER.
3:50pm - Get home again. Change another bad diaper. Get Keegan cleaned up, dressed, and start laundry. Get a call from team that we can do the 4-hour infusion tomorrow at the Center for Cancer and Blood Disorders.
That only get us to 4pm, but unfortunately, now I need another glass of wine for recounting it all in writing....