A day of surprises!

Today has been a very interesting day. First of all, I woke up to this:

Yes, I realize it is just a dusting, and yes, I know that's not "real snow" (I did live in Buffalo, NY for a while, so know what the white stuff looks like) but for this being March in Texas, this little dusting is exciting to us.  Actually, it snowed last Easter, like enough to build a snowman with, so it does happen, but rarely.

Anyway, after figuring out that co-op was not cancelled, went on our way to that. From talking with other Mom's there, I found out that all of the other ones that I spoke with who have a child/children with special needs, all of them have had a bad experience and not gotten good care at the MTF (Military Treatment Facility) here.  

This leads me into my tease from yesterday about our "wonderful" experience.  Long story short, my Sophia has several complex on-going medical issues.  She has endocrine/growth issues, gastric issues, and on-going migraines that have increased in frequency and intensity in the last couple of months.  To keep it short (too much to write, and I have hashed it over so many times in my brain this past week, I am just too exhausted to type it all out) chiropractor on Monday diagnosed her with scoliosis.  Took her and Hannah (who exhibited the same one shoulder higher than the other and uneven hips) to the pediatrician on Tuesday to be evaluated.

Enter Dr. Jerk-off, who treats me as if I am a fanatical over-reacting freak because I am advocating for my child's healthcare, or lack thereof. He gives the girls a shoddy physical exam, spending no more than 2 minutes per girl, not even having them remove their fluffy fleecy hooded tops while checking their posture and lifting their shirts in the back to feel their spines.  He appeases me and puts in x-ray orders, basically telling me he will not give us a referral to a pediatric orthopedic specialist unless he deems it necessary, which he has pretty much made it clear he will not.  Then he gives me a nice lecture on how "people like you waste time and money seeking healthcare outside the MTF, when all you have to do is call and make an appointment and come in to one of our clinics and receive free healthcare!"

And what kind of care are we receiving?  The kind where he sends us to the hospital radiology department to get x-rays and never puts in the orders so we wait just to be told to come back tomorrow. The kind where we are told to come 15 minutes prior to an appointment just so we can wait an hour to be seen by the doctor.  The kind where the sibling of another child in the waiting room begins vomiting and gets feverish and very lethargic and the nurses refuse to even take the poor child's temperature because he did not have an appointment today, it was only for his brother.  The kind where we call radiology a day later and they still have no orders. The kind where I have to call the pediatric clinic and have them track Dr. Jerk-off and remind him to put the orders in.  Yes, folks, this great healthcare that I am receiving at no cost to me.

  

This is the same healthcare that has the radiologists take my 2 girls back together for their x-rays, NEVER ONCE verifying which girl was which, never once calling them by their names, only referring to them as big-sis and little-sis.  How in the heck they know which girls name went with with x-ray is beyond me.  We'll get to that.  These wonderful x-ray techs leave my children alone in the dark scary x-ray room, just telling them, we're going out, we'll be back.

  

Next day, Dr. Jerk-off calls with the results.  Apparently, according to their x-rays, Hannah has scoliosis, but Sophia's x-ray came back perfectly normal.  How this is, when I saw her x-rays from another source on Monday with my own eyes, I do not know.  Think they could have mixed them up?  Gee, you think?

Fast forward to today.  We actually had a great appointment with a wonderful (this is honest, no sarcasm this time) pediatric neurologist who actually CARES about my daughter and her health.  He spent an hour giving her a full neurological work-up, taking a complete history and he listened to every word I said.  And he was interested.  And he was concerned.  After hearing the story of the jerky ped. from Tuesday, he informed me that I need to switch her primary care doctor to one who is competent.  That would be great, BUT, she has not seen her primary care doctor in over a year.  Why, you ask?  Because she is always totally booked and we get whatever idiot is available.  The great pedi. neuro. is astonished at the lack of treatment Sophia has received.

  

He cannot believe that she was not referred to him much sooner, which probably could have saved her a lot of pain and anguish.  He is shocked at the bad information I was given back when she was first diagnosed, basically that there was nothing they could do for a child her age.  He was genuinely concerned and came up with some things to try to get these migraines under control.  We have 3 meds to try, and hope that they work.

He informed me that her pediatric endocrinologist is no longer even in the Army.  So great is our care, that no one thought to make sure that my child had continuation in her care after her doctor retired.  She is currently without a pediatric endocrine doctor now.  Dr. Wonderful put in a new consult order, so hopefully we will get one soon.  He is concerned at her growth and again mentioned growth hormone treatment, which I still don't feel comfy with.  In any case, I need to try to get some fat and calories in my little peanut, and I need to go invest in a good scale to keep track of her weight.  One of her new meds can cause a decrease in appetite and weight loss, which would be really really bad for her, as she is already below the 3rd percentile in height and weight.

  

And get this:  as he is examining her, he says, "She has a curve to her spine, and lordosis as well."  So strangely enough, all in one week she has been diagnosed with scoliosis, un-diagnosed with it, and diagnosed again once more.  I explained to him my visit with Dr. Jerk and the x-ray mix up (which is now obvious that there was a mix-up) and he just shook his head.

Then he lamented with me on the sad state of healthcare. His words on the situation: "The thing that is happening is, there are so many patients here, and so few doctors, that all of the appointments are being booked up for acute care (sickness and injuries) and children like Sophia, who have on-going complex medical issues that are not acute, are falling through the cracks."  There you have it folks, right from the horses mouth.  These are the things I have been saying to myself and others this entire roller coaster ride of a week.  He went on to say that she should be able to have an appointment with her primary care doctor who can sit down and go over and over her files and medical records and dig and dig and find out what to do to help my child, but these things just aren't happening.

I mentioned Shriners to him, and he said, "That is where she needs to be.  You need to get her there, so she can get the proper care from people who know what they are doing in that field."  That cemented what was already a pretty sure thing for me.  Dr. Wonderful knows how hard it is to get an appointment with him, so he gave me his direct voicemail number, so if I should have any questions, or any complications arise on the new meds for her headaches, I can call him and he can help me just as well over the phone.  He really wants her hormones tested again asap, so I am hoping that endocrine consult won't take too long.

So that has been my "one heck of a week" and I could not be more thankful that it is OVER.  I have a lot on my mind still with the logistics of Shriners, mostly Nick getting leave and the dates and timing of it all with our PCS, but my awesome husband told me to get the application in the works, and as far as dates, he will take care of that part when it comes to that.

Oh, and there is no pediatric neurologist where we will be moving, so if this gets added to Sophia's EFMP, they may end up changing our orders yet again.  It is all out of my hands, and now, thanks to this blog, it can be out of my head for the night.