I need today to go away. The deployment gremlins are out in full force.
First, I have a plumbing leak somewhere. It leaked and the varnish soaked off the entertainment center and onto the rug. Last night they came to move the entertainment center and turn on a huge fan to blowdry under the rug. This of course had to stay on all night. This of course sounded like a freight train moving through the living room.
Now the plumber is coming tonight, possibly to cut a hole in my wall.
The house is still under warranty, so it will probably all be taken care of…but I still have to deal with it. Not to mention I can’t take care of other errands while I am waiting for all these other people to show up.
After a GREAT day and decent night last night, Lilah is having an AWFUL day. She wakes herself up screaming. Not fussing–screaming. With Tetralogy of Fallot, I am supposed to keep her calm.
She cries unless we are holding her, sometimes while we are holding her, until I feed her and then cries until she passes out for a nap again.
I already tried eliminating cow’s milk from my diet but that doesn’t seem to have done much of anything except make me feel hungry all the time (I am a vegetarian and get much of my protein and fats from cheese). On the bright side I already weight what I weighed at my 8 week pregnancy appointment.
I suspect she has reflux, so I wanted to make an appointment for her so they can try to track down what is going on.
I am trying to have Lilah see a doctor that her cardiologist recommended and trying to have her see this doctor consistently. So, I went to the TRICARE (health insurance) office to fill out the PCM change paperwork. The representative told me that I should be able to make an appointment right away with the recommended doctor because the appointment line should not have ANY PCM info in their system yet…even though they claimed they are showing her for a different clinic.
WELL…TRICARE doesn’t have this PCM change on the file yet, and no one can tell me WHEN the PCM change will be effective. I just spent an hour trying to make appointments for her. The Appointment Line transfered me to the Patient Rep, who obviously knows about Tetralogy of Fallot but was not listening to me. He kept thinking that (A) Lilah was having a Tet Spell (in which Tet babies turn blue) and (B) I was trying to make an appointment with a Cardiologist. Finally, he calls the apointment line to report exactly what I already knew–that they can’t make an appointment until the change is in their system.
Honestly, I understand that the changes need time to take effect; what I don’t get is how come no one can tell me HOW LONG those changes will need to take effect.
I am also P*SSED that this guy who is supposed to be my advocate is so obviously not listening to a word I am saying.
In the middle of juggling phone calls with the patient rep and the plumber, Lilah wakes up screaming again.
I’m just going in circles with bureaucracy; my entertainment system is dismantled and sitting in the study; my rug is stained; and, most frustratingly, my poor little baby seems to be in pain and I can’t take her to the pediatrician her cardiologist recommended. Instead, I have to involve yet another pediatrician in her care.
I know Lilah will be fine. We’ll either track down what is bothering her or she will just grow out of it by around 3 months. I can survive three sleepless months alone if I need to. I’m sure this pediatrician is perfectly competent. I’m just frustrated.
Right now Lilah is passed out so I should do some work before she gets hungry or wakes herself up screaming again…but I just had to vent a little first.