I don’t like to complain. My view is that we were told the first week that he wouldn’t live, and if he did he would be in a vegetative state. We were told in not so many words that we should let him go. We decided to let him fight until he told us he didn’t have any fight left. So in essence, whether its reality or not, I chose this life. So who am I to complain about it, right?
But today, I want to scream. I want to scream cuss words to the high heavens, and I want to break down and cry.
We have tons of doctors.
Pediatrician, Pulmonologist, Neurologist, Endocrinologist, Nephrologist, Opthamologist, Opthamologic Surgeon, Neurosurgeon. There are more but in my present mind I can’t seem to think straight.
Here’s the thing. My kid throws up … violently. I am headed to the store to get some pedialyte because I don’t know what else to do – that is what you do for typical kids, right? I am so out of it, I could drive to the store in my sleep and I missed three turns. LONG way around, AND I almost hit someone. Because all I can think is I have ALL these doctors, but my kid throws up and can’t keep anything down… WHO DO I CALL?
It’s just throwing up right? When it comes to Superman, its never that easy. Throwing up caused him to go into full blown seizures AND can throw his DI and Addison’s into a tailspin. We managed to get all of that taken care of. My pediatrician answered his page immediately and prescribed antinausea meds over the phone with instructions to go straight to the ER if he threw up after we gave him the meds.
That was Saturday.
Come Tuesday (the Monday after the LONG holiday), I call the pediatricians office on an unrelated note, but there is NO way to know what I am calling about based on my number on the caller ID. The phone rings 25 times before I hang up. I remember this nifty little trick from circa 1990 – *67. I IMMEDIATELY dialed back the office and blocked my number and strangely they picked up on the second ring. Of course I WAS calling about the orders for therapy they have been so blatantly refusing to sign. Mind you we are THREE days from losing services. They got the orders a MONTH ago. (I hope the use of ‘shouty caps’ shows my frustration here)
So regardless of the nature of my call, my pediatricians office – who is fully AWARE of the fact that I have a VERY medically fragile child, is refusing to answer my calls, while the doctor still feels the need to return my page even on his holiday weekend. With urgency. My theory is, if I were calling with a medical emergency (my insurance requires you call the PCP before going to the Emergency Room UNLESS you are in a life threatening situation) they are denying me proper medical care. So is the doctor even aware this is happening?
I have never been anything but nice and respectful with everyone in that office.
What’s a mom to do?
WHO do I call?