Last night I had a dream based loosely on reality.
In it, I was impatiently waiting on the EEG results from our hospital stay six weeks ago.
In reality, I am still waiting on those results.
In the dream, I spent my time making phone calls to attempt to track down the results. I called the neurology chief, other neurologists in the same clinic, I called anyone and everyone I could think of. I was tired of waiting.
In reality, I have been calling the neurologist weekly for at least four weeks. I have received exactly one return call, two weeks ago, in which he told me that the lab never sent him her results. He said he could check on it and call me the following week. I have had no call backs since then, and I have left several more messages, both with the receptionist and his secretary. Our pediatrician has attempted to contact him as well, with no replies. I went so far as to contact the EMU (epilepsy monitoring unit) lab to get more information about the delay, but have received no return calls.
In the dream, the neurologist finally returned my call. He said, "Kyla, remember the last time we spoke? I asked you to call and ask your audiologist for some information on KayTar. I told you I could not read the EEG results until I had that information." Suddenly, I had a flashback, and indeed I did remember his request during the previous phone call. I immediately called the audiologist, retrieved the information and passed it along. I spent the remainder of the dream calling all of the people I had harassed unnecessarily in my pursuit of answers. I had to tell them that it turned out not to be the doctor's fault at all, but it was my own mistake causing the hold up.
It took me five or ten minutes upon waking to differentiate between the dream and reality. For a while, I thought, "That's it! I just need to call the audiologist and get that information!" But slowly, I realized that was only the case in my dream. I do need to call the audiologist, but in regards to a completely separate issue. I woke feeling both relieved and embarrassed. The beauty of the dream was because the delay was my fault all along, I had the power to rectify the situation. In reality, I have no bearing on when my calls get answered or what the outcomes are. I felt embarrassed because I had caused such a fuss when I was actually the cause of the delay. At this point, I would gladly take the embarrassment if it meant I also had the power to track down the answers I'm seeking.
The elusive answers aren't only tied up in this EEG, they are lurking everywhere. In the meeting yesterday, I think the act of verbally listing exactly how much we don't know cracked the seal on the big ol' bottle of crazy I keep sealed tightly inside. My dream was the teeniest bit of pressurized air seeping out and in its wake, the contents of the bottle are shifting and churning. The questions I keep silenced inside range from serious to inconsequential, but the punctuation at the end begs for an answer regardless of the severity. I could list them for you, in fact, I started to while composing this post...it just felt like too much. I didn't want to hit post and see those questions staring back at me.
I hate looking at things like this. There were times when the waiting was so much harder. Times when I was terrified, times when I thought I'd lose her forever. Times when she wasn't thriving, her weight was down, she wasn't progressing and every day felt heavy and I was constantly filled with a quiet sense of dread. There certainly are worse things than unanswered questions, but when you are stuck in the limbo of not knowing, you are forced to entertain the possibility that the outcome might not be rose colored. Things are changing, she has more symptoms than she did a year ago, in spite of her developmental progress. I don't know what it means for her. When you don't really know, nothing is guaranteed. I forget this often; I prefer to look at the other side of things. I choose to dwell on her accomplishments, how far she has come, how far she is going. But medically speaking, I don't know much about her situation, no one does. When I'm forced to really think about that and I see just how wispy those threads of information are, it knocks me off balance. When my dreams highlight how little control I actually have over the situation, I spend the next day in a sort of mental fog, the air feels thick and full with the specters of those unanswered questions hovering around me. Questions that, unfortunately, I have no authority to answer.
i can't believe this. i can't believe you are still waiting for answers. i want to go shake those people by their heads.
Sometimes the complete powerlessness is just overwhelming. Hang in there and keep fighting for answers.
Unbelieveable. 6 weeks, and you're still waiting? Absolutely unbelievable. And, frankly, unacceptable.
I'm surprised you haven't actually exploded about the whole thing at this point, with her symptoms getting worse, not better, and the numerous phone calls that get you nowhere.
I hope they come through for you first thing Monday.
Isn't it mindblowing when and how our subconscious sorts things out? It's like the sleep state being somewhat relaxed (not entirely b/c afterall we are moms) well this more relax state allows all the information to float to the top. That said, I really hope that the results come in asap and maybe there will be a piece of the answer in there.
I've had those types of dreams, too. I'm so sorry you're in such a place of confusion and waiting that your subconscious mind is stepping in to set things straight.
Ugh. There is no reason that you should still be waiting for the results of a test after six weeks. If she had had that test while hospitalized, you would have had the results within a couple of days. Ridiculous. And so unfair.
I'm sorry, K., for the not knowing. It's such a weight.
Waiting is a certain kind of hell in my books.
It is obscene that you are still waiting on those results.
Something I have learned through friends of mine who have both experienced having their children go through the medical system, is that you have to be the squeaky wheel and not worry about being a pain in the butt to the doctors.
I really hope you get your answers soon.
The unknown sucks. Waiting for what you hope is a missing piece of the puzzle makes it even worse...darn those hold ups!
My dreams often hang over me after I wake.
I too hope the answers come soon so that the fog will lift.
There is nothing worse than the waiting and Not Knowing.
It's funny how the subconscious tries to fold things up nice and tidy for us, isn't it? I had a similar dream last night about some stuff that is sucking up way too much of my mental and emotional energy. When I woke up, for a minute I thought, "So that's it! Problem solved!" But it isn't. I just have to wait. And hope. I'll do it in quiet solidarity with you, okay?
It's so incredible to me that you are still waiting . . . six weeks later. Craziness!
Oh Kyla. I wish there was something I could offer.
I can tell you my experience that bad news always comes quickly but that doesn't help you.
It is easy for me to look from the outside and see Kaytar's progress and believe she will continue to improve but as parents the unknowns haunt us because we are the only ones who will have to deal with them.
I cannot imagine your worry. It is so stressful to have to manage your child's care. When people don't do their jobs and make yours harder it is infuriating.
This makes me sick for you. Have you tried calling customer service at the hospital? I'd call and pitch a holy fit with them. You poor thing, it's one thing when it's an adult waiting for that long, but we're talking about pediatrics! Unbelievable!
Oh honey, I am just aching for you right now. I am bad at waiting for ANYTHING, but to be kept in the lurch for so long for something that could affect your child's health or outcomes is just... cruel, really.
I really hope you get some answers soon, Kyla, and that they are the kind that makes your heart swell up and your body sag with the joy and relief of them. That they will point to something concrete and manageable. It may be a long shot, but that's what I'm crossing my fingers for anyhow.
Meanwhile, I tell you again you are amazing, strong, and patient. I know I would have lost it by now.
Babe. Your strength is just inspiring. I am so sorry you have to wait for so long.
give me those numbers, lady and i'll go beat some sense into those people!
seriously, though this sucks.
I know it's frustrating not knowing. My daughter has different problems but I can still remember the day I realized it didn't really matter what they called the thing, it wasn't going to change anything. My baby girl couldn't be fixed, she was going to stay the way she was. That was hard, but freeing as well.
As for modern medicine, what we know is far outweighed by what we don't know.
You are living in vivid technicolor, the nightmare of all parents...the realization that we have so little control over the lives of our children. We so wish to shelter and protect them, but control is a perception, not reality.
Notwithstanding, do continue to bug the professionals, it's their responsibility to respond! And their lack of response is likely their own reaction to the complicated "unknowns" in Kaytar's non-diagnosis.
You are a terrific Mom! Keep up the good work.
You are in my prayers!
(And you're so on-track with your interpretation of your dreams!! You'd make a great therapist!)
Oh Kyla, I am so sorry that you are in this limbo state. It must be terrible, the not knowing. Won't they even tell you what is taking so long or when the results will be in? I hope you get answers soon.
I can feel your frustration and obviously it has transfered even to your sleeping hours...when you're supposed to have some peace. I hope answers come. Sometimes they don't and then we have to dredge up all this strength and hope and peace on our own...and that is tough.
Gosh darn it...I hope they didn't lose the tests. Six weeks is really unacceptable. Keeping you in my thoughts.
Oh. my. god. I can't believe you've had to wait so long! It's simply inexcusable for the neurologist to not get back to you. Even if he doesn't make the call himself, he has people, nurses, and assistants he can delegate that too. Not being responsive to questions that may affect your daughter's future is unacceptable. But hey, I don't need to tell you that.
You keep being the mama bear fighting for her cub. I know it's hard not to have any control, but if it makes you feel like you do, then keep harassing people. You're just trying to get some answers. ((HUGS))
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