I started this post earlier, but I was a wreck and decided not to subject you all to the ravings of my overly emotional self.
Today was supposed to be my day off. My carefree-clean-the-house-do-laundry-forget about-all-the-KayTar-drama-for-24-hours-day. Well, I'll spare you the suspense: IT WASN'T.
Last night KayTar had another episode. It has been LESS than the usual two weeks. They are getting closer together. I dreamt about hospitals and ER's and CT scans and MRI's. This morning I woke up and stumbled to the coffee pot turned it on, then I realized the kids were both awake. BubTar was watching Playhouse Disney and had put Blue's Clues on his computer in KayTar's room for her. Usually I sit at my computer and drink my coffee while reading a few blogs, and I enjoy the blissful quiet. Not so much today. Almost directly after finishing my coffee, the phone rang it was the Children's Hospital on caller ID so I assumed it was the Feeding Clinic. YAY! But it wasn't. It was the MRI schedulers. There was no YAY. The lady on the phone informed me that my daughter is not eligible for a Saturday MRI because she has a history of vomiting (because of the episodes). They do not have an anesthesiologist on staff on Saturday (nurses only) and they can't sedate someone with a history of vomiting. Dandy. They pushed my MRI back a MONTH. I have to wait another MONTH, and my child is getting worse, not better. How can they do this? The only thing that has gotten me through the past month was looking forward to that MRI. Its been my freaking mantra "Just wait until the 23rd. You'll know on the 23rd." and I don't think I can do that for another month.
So I called the pediatrician's office, and immediately started crying (you don't know me that well, but I hate crying). My pediatrician was out of the office today (of all days) and I told them my story and they transferred me to referrals. The nice lady said to try another hospital for a quicker appointment (I told her to hold on about 3 times in the course of our short conversation to choke back tears and suck it up a bit). I called said-hospital and talked to a nice man for about 20 minutes regarding scheduling, then he took my insurance information and said "Oh...hold on." When he came back he said "You can only come to our hospital if Children's Hospital does not have the ability to DO a procedure, even if you have to wait for it." DANDY! So my hands are tied and my baby is getting worse. When my pediatrician gets in tomorrow, I will call and see if she can do anything, or if she thinks the neuro can push to get it sooner. I'd take a hospitalization if it meant we could get this MRI done. What if it is a tumor? It seems to be progressive, whatever it is, and the longer we wait the scarier it is. Yesterday the therapist said her head measures too small for her body, but she was satisfied when I said that we had an MRI on Saturday. We think she might have lost her third set of words...we haven't heard "sit" or "go" in weeks. She is down to zero words...but she has learned 1 word in sign. (yay!) I just kept saying "Don't freak out...wait for the MRI..." but now I don't have that and things are piling up in my mind. I'm swinging at the end of my rope here and it's killing me just to wait until tomorrow to talk to the pediatrician....I don't think I'll make it through another month of waiting.
I don't know what to say. I am so sorry to hear about this. Sometimes I hate insurance companies because of this kind of thing. I am with you, I would take a few days in the hospital if it meant that she would get that MRI early. Good luck with the pediatrician tomorrow, I hope it helps.
I'm so very sorry - this is just terrible. I've had frustrations in the past with doctors, but nothing like this. I hope your pediatrician can help.
Wow. This is unacceptable.
I wonder what would happen if you brought her into the ER (I know, yet again!) during/after one of her episodes and simply refused to leave until an MRI was given?
This is an emergency situation. A month more is a big deal; your emotional state is absolutely justified.
I hope someone listens to you, pronto.
I thought about that too. Could you just take her to the ER? This is so scary. My heart goes out to you. I will pray!
How awful!!! I hope that you are able to get the answers you need very soon.
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