Finally! There is some forward momentum toward diagnosing Nik’s mystery ailment. It seems to have an awful lot of the hallmarks of Intracranial Hypertension and yet there is also still the disturbing immunological component which has waxed and waned for more than a year now. The chronic, low-grade fevers and mild infections, the low immunoglobulin followed by the “robust” response to immunizations (as tested by various blood work for antibodies). The ear and head pain, the eye discomfort, the constant swollen glands without any active infection. The constant nocturnal awakenings and episodes of excruciating pain —where once Nik slept peacefully, painlessly for ten to twelve hours a night without fail.
You can understand why we might be a tad tired and frustrated, anxious and ambivalently hopeful about finding an easy or simple answer. Nothing about my son has ever been “routine” or straightforward. Call me jaded but I don’t expect that’s about to change any time soon.
This is why I have such mixed feelings about the MRI now scheduled for Friday morning. Yes, as in the day after tomorrow. (Have I mentioned lately how much I appreciate Dr. Mary? She called in some favors to make this happen so fast!) Either way it turns out, it’s not good. Stay with me for a minute, here…
If there is a mass or lesion or some other visible anomaly in, on, or near Nik’s brain that’s clearly not a desirable thing at all. In fact, that’s got to be one of the most terrifying things for me to think about. Yet, the alternative —the idea that there is no visible, discernible cause for all his excruciating and unpredictable pain? I’m not sure that’s any better. The need to find answers juxtaposed with the need to find “normal.” It just isn’t reconciling in my poor brain. Is this some sort of cruel cosmic hoax? WTF?
What’s a mother to do? “Dear Heavenly Father, please let there be a tumor in my four year old’s skull…” versus, “God, please don’t let them find anything wrong in Nik’s brain (which means they don’t know what is causing the pain)…” I can’t reconcile myself to either. If I thought I felt lost before, this is a thousand times worse.
What would you wish for if you were me? Ok, besides normal MRI results and the complete cessation of any and all of Nik’s mysterious and debilitating pain? I only wish my questions weren’t rhetorical or my dilemma hypothetical.
Keep on praying, please? For what I can’t say —the best possible outcome, I guess. Whatever it looks like.
Oh dear. Neither scenario sounds good.
Prayers, of course, of course. I’m not only praying for Nik, but also for you and your family, that God will keep you strong through all of this. And of course for the team that is working to find out the cause… and that they find it soon… and that it is treatable.
The best possible outcome all around, Niksmom. That’s what I’ll pray for.
Also wanted to tell you I’ve just posted a wrap-up which includes quotes from you and a link to your wonderful blog. Hugs from Denver… K.
I know it seems impossible to know what to wish for under these circumstances so I will simply wish for the doctors to RESOLVE this and make an inspired diagnosis. I will wish for better times and the light at the end of the tunnel.
And though I don’t pray, you and Nik are pushing me awfully damn close!
Sending hugs!
I feel for you and am praying you get some good answers. I totally know what you mean about wantint answers and yet not wanting them. We too struggle with these feelings. Whenever we think we have an answer it is not quite an answer and more work needs to be done. It is rough, frustrating and exhausting. It is good that you are tackling your concerns and getting the testing and if you find nothing there will be more testing to look into. One step at a time. Prayers are with you and Nik.
No matter how bad the news (and I am sending out many good thoughts out into the universe that it is not bad news), I’d want to know. Then I’d know who my enemy was.
We’re all here surrounding you, supporting you. Big hugs to you, Nik, and Niksdad as you get through this.
Hugs and prayers to you and your family.
Hugs and positive thoughts to you, Nik, and all of the family. No matter what the results of the MRI, I wish for you peace.
Ack. Truly a dilemma. What I hope for is some sort of answer with a clear treatment that will get results for Nik. Fingers crossed for Friday.
It’s Wordless Wednesday in some parts of the blogosphere, so my best advice would be to take your cue from that and send out your prayers, thoughts, feelings, energy, without worrying about the words. I have a hunch that the prayers, thoughts, feelings, and energy get interpreted even without a lot of text, footnotes, and translation.
I continue to be right there with you.
I guess I’d try to think past the results of the MRI to the time when things are getting better because of whatever they eventually learn. Don’t know if you can get your mind off the MRI at all, but I do know that the prayers are still coming from our house. I wish I could stop by and do something helpful. Give him a big hug from me and my boys!
I will be keeping you all in my thoughts and anxiously awaiting Friday’s feedback.
Please be assured that the prayers and positive thoughts continue.
Well, given those choices, I believe knowing is better than not knowing. Then one can plan a course of action.
Wish I could give you and Nik both an extra-good squeeze…
What to wish for? What a terrible situation to be in! I agree with the people who say an answer is good b/c then you can plan a course of action.
I will be sending my thoughts to you and hoping you find some relief from the answer tomorrow.