I've spent the entire day on the phone. At multiple times today I have had a phone on both ear. I've gotten a few things figured out and so many things left. Eli meet with our local GI doc tomorrow to officially transfer his care to the GI doc in KC. I called KC to get him schedualed and at first they only had an appt the middle of August. She called me back 2 hrs later and said they had a cancellation and that they could get him in July 7th. So I'm rushing to get all of his medical records and testing sent up there ASAP. I've been on the phone with the pediatrician 3 times today, the pulmonologist twice, the neurologist once, the surgeon 3 times, the motility specialist 4 times, and medical supply twice. Oh and PT twice, and medical records twice. I've also pumped 6 times, ran 4 tube feeds, pushed 1 bolus feed, did Ben's respite paperwork with his 2 workers, changed countless diapers, broken up multiple fights, fed the other kids twice, done 2 loads of laundry, ran to target, took bob to work, enrolled and took the kids to VBS, orientated a new nurse, and I ate lunch(sorta). Somewhere in there I also spoke with my doc, who has called me out another new prescription. My head is now hurting so much that if I look to the right or bend down I have a horrible shooting pain from the back of my head into my right ear/temple/and upper jaw. She's not sure what's going on. Our pharmacy just delivered the new script so hopefully it works.
I'm exhausted. Very exhausted. Bob is gone another 14 hrs today, as he was able to pick up an extra 2 hrs of OT.
The older kids all had VBS today leaving only Ari, Eli, and I home. They had a good time and are super excited to be going again tomorrow! They have spent a bit of time outside, but mostly indoors these last few days as it's been so darned warm! Eli is fussy as could be, he's missing nursing and doesn't understand. His mouth is sooo dry and his lips are cracked and chapped.
Tomorrow we have VBS, Eli's GI appt, Ben's BASIS re-evaluation, and tons of paperwork and phone calls for our next trip to KC.
Will update sometime tomorrow when I get a free moment!