My Day Thursday..Went from Bad to H#$L PART 2

Hello World, Reba here again. Yep, as promised I am back to write about my day Thursday, which was just terrible on so many levels, even though, it started off like any other normal day, in pain, but I was moving getting household chores done.

In the last blog post, I had just left the pain management appt for myself, I walked out of the clinic when the phone call came in. My vehicle transmission had gone out, completely. The minimum to get the transmission fixed, at minimum, is 350.00 plus labor and the cost of fluids.

Yep, with that news, I was just outdone. First my pain is over the top, then some, now the only vehicle my family owns has bit the dust. I questioned myself, as to what else could go wrong, eventually I will learn not to ask that question.

My oldest daughter, Becky, took her daughter, Kristie, to New Orleans to have an MRI done. Kristie has been having some pretty massive migranes. I couldn’t cancel my pain management appoinment, we are in groups, and to miss an appoinment, I wouldn’t get seen for another 6 months. Becky didn’t want to have to wait for Kristie’s MRI, so, against my better judgment we decided to go our separate ways and conquer both appoinments. I never miss New Orleans appointments. I hardly ever miss local appointments unless I am stay home to babysit Kristie. Again, separating and attending both appointments was against my better judgment, but it must be done. I knew what my doctor’s appointment held in store for me and I thought that Kristie’s appointment was going to be a diagnosis of migraines, meds would be prescribed, and that would be the end of the appointment. BOY was I ever wrong.

My pain management appointment ended, the call about the transmission came in, then Becky called. In her voice, I can hear where she was fighting back tears, my heart sank. I feared that they had been in a car accident, millions of things went through my mind, but the words that came out of her mouth next, my heart sunk; Literally!

The next words out of her mouth will ring in my head forever, “Mom, Kristie has something called Chiari malformation, it’s a birth defect, and she needs brain surgery.” I had to make her repeat herself again. I just knew that I didn’t hear my grandbaby was going to be needing brain surgery, I was wrong, I did hear her right.

In my head I was thinking, birth defect? Kristie will be 5 years old in June, how is it we are just finding out about a birth defect? And what the heck is the Chiari malformation? And what is this brain surgery going to involve? And why is it my grandchild? Oh I had a million of questions going through my mind. Questions that we had no answers to because Becky was so stunned with the diagnosis, she was speechless when she was with the neurologist. I am not sure that I would have been any less speechless.

So once Becky and I were able to be face to face, I learned that Chairi malformation is a birth defect that is a bone at the base of Kristie’s skull. The bone in question is about 3 inches longer than what it needs to be. Oh and that’s not the worse of this whole darn (at this point I don’t mean darn) fiasco, the neurosurgeon will not be removing the bone from her head, but they will be making room in Kristie’s skull for the bone.

Becky is still in shock over the diagnosis, but she has started doing a little research here and there, my son in law is just outdone. I am trying to find out as much as possible. Using a social media network, I have found several post op moms of kids with Chiari, they are helping me with what I don’t know, what I need to know, what I need to do research on, what the symptoms are, what’s the best area hospitals w/ the best neurosurgeons. The list of what I don’t know is still very long, I am figuring I will never know everything there is to know about Chiari malformation, but I do hope to be at very least an informed Maw Maw, when it comes time for Kristie’s Neurosurgeon appointment.

I am praying that the diagnosis is wrong and is all a big mistake, but I am still going to be prepared in case.

Thanks for letting me rant,
Reba

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2 thoughts on “My Day Thursday..Went from Bad to H#$L PART 2

  1. Tiger

    Reba – I am a 36 yr old veterinarian that has chiari malformation. I had surgery in 2004 and am doing well. It is a scary diagnosis, but it can be managed. There is a great website called conquer chiari that has tons of good information. The chiari community is amazing and extremely helpful. Hope this helps and let me know if there is any other information I can provide.

    Reply

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