Visiting family in the States. Chicago. Overnight stays at two friends houses. Wales and a lovely night with my husband.
(That was my version of a record scratching.)
Two very frustrating events today:
The Boss’ PA called me today to ask that May come in to the hospital to check her phenobarbital levels before her appointment with him on Wednesday.
This is typical of the hospital. I took May in over a month ago to see him. Then, the Boss said that he wanted this done, plus a brain scan to check her eye sight. When I returned from the States, neither were organized.
I phoned and left a message to that effect two weeks ago. I sent an email a week ago. I heard nothing.
Then, a phone message from him on Thursday asking her to come in for her level check the following day or Monday. 24-hour notice.
As we were in Wales, I didn’t get the message. Today, I phoned to arrange it. About 10 minutes later, the PA called and said that because I hadn’t checked in there were no available appointments for today.
“That’s fine because we wouldn’t have been able to come in any way, or tomorrow, as May has other appointments.”
“Oh, she has to get these checked before the meeting on Wednesday,” the PA insisted.
“That just isn’t possible,” I said.
“But, she must,” she repeated. “He will want them done before she comes in.”
This infuriated me. That I managed the following without swearing is a miracle: “We were available over a week ago, but no one bothered to make the appointment. We can’t just come in with 24-hour notice. May has other appointments she must make – physio, OT and a play group today and tomorrow.”
A sharp intake of breath from the PA, “I don’t know what to do then. It will be difficult to rearrange the appointment on Wednesday…”
“We are not rearranging,” I interrupted. “My husband is taking off work for this. Her levels are only one of a number of things we need to discuss. We will be there on Wednesday and take her levels after. He can call us with the results.”
I hate the implication that I am irresponsible because I don’t drop everything at their request. If this was so important, and checking she is receiving enough anti-seizure medication seems very important to me, why did they not make the appointment? Their methods are not just disorganized, they could be dangerous.
Secondly, May’s physio and OT appointment today went splendidly – decreased tone in arms, more responsive laughing (and howling) from May – but, a let down for our greatest pleasure, May’s bouncing.
May is now bouncing incorrectly. She is landing on her toes and on side of foot.
“You have to stop bouncing so much,” her physio said, “or the tone in her legs will increase.”