Monday, January 27, 2014

The latest...

So I know there's a way of organizing posts into nice little sections... need to figure that out.

This is a newsy post, mostly a record for myself so I have some context for my other posts.

The latest thing in the family is the ordeal of trying to get Ladybug's head taken care of before Squirt gets here in 14 weeks.  (Yes, he'll get another nickname once he arrives.)  At the moment, we have her on antibiotics, allergy medications, and must-be-made-of-gold ear drops in an attempt to clear up some sort of respiratory infection and rid her ears of fluid.  This is so we can then get clearance to have her put on a ventilator for her brain MRI.  She's been sedated 3 times before, but each time she's continued breathing on her own.  This time, though, I suppose because it is a longer procedure, the sedation is going to be deeper; they will actually have to insert an artificial airway and breathe for her.  When I found this out my mommy heart skipped a few beats, but then my medical side took over and realized it's okay.  This is what I'm told they'll be using, called an LMA (laryngeal mask airway); it's between a bag mask and full intubation. I've played with these in CPR/ACLS classes; fun stuff till it's real.
Basically, if she goes under and gets ventilation with any sort of cold/illness, it runs the risk of turning into pneumonia.  An adult can be told to deep breathe and cough; a toddler, not so much.  When I try to get her to cough on command, she gives me a little fake cough which doesn't do diddly squat for her lungs.  She's not been completely well since we landed in TN over a month ago, so as much as I want to hurry this along, I know waiting is probably best.  She certainly doesn't mind taking medicine; she loves the stuff, which is sort of disturbing actually...

The worst part of trying to get her well is keeping her from picking up any other germs.  There have been 3 cases of whooping cough confirmed in the county since January, and not vaccinating is pretty popular up here. (not going there not going there not going there)  We're vaccinated, but that can't guarantee 100% protection.  So basically we're going to be staying in for the next couple of weeks, which I hate to do but don't feel I have much choice about.  If I thought she wouldn't have been disappointed, I'd have kept her out of the nursery this morning at church; she's a creature of habit, though, so going to church and not going to nursery to play might have caused some issues. But no library story hour, no play group, no museum, no starting day care one morning a week like I was really looking forward to...

The reason behind all this, if anyone ever reads this that doesn't already know, is that we are looking for signs of increased ICP (intracranial pressure).  The best of the best doctor in the craniostenosis field gave me some suggestions for tests after I emailed him a brief history and some pictures and CT images of Ladybug's head.  One test, a basic eye exam, we do routinely anyway; another test, an rVEP, which is basically an EEG while looking at a specially designed moving pattern, can't be done in the state on pediatric patients.  So that left us with an MRI, which our "local" cranio doctor had also mentioned as a possibility at her November appointment.  I'm having our local pediatrician order the test since I haven't heard back from our "local" cranio doctor about the radiologist's opinion of the correct CT scan. 

I feel I'm walking a bit of a tightrope at this point... doing what I feel is best for my child while risking making medical professionals angry with me.  This is either going to cause them to respect me, or it's going to cause them to dislike me which may or may not spill over into their treatment of my child, possibly children if Squirt also has this issue.  The doctor I know I'm not making mad is in Dallas, and that's a bit of trek to make... but if that's the best person to treat our children, then we'll do it.  

But back to the increased ICP... I'm unsure just how much they can tell about that from an MRI.  I know they'll be able to tell how much space between her brain and her skull there is; how definite they are about how much there is supposed to be at this age I'm uncertain.  They will be looking specifically for a condition called a Chiari Malformation.  This is where part of the brain, the cerebellum, is pushed down into the spinal column area.  This is not a good thing... when you start squeezing the brain enough to cause that, you have issues.  From what I've read, this is prone to happen when the lambdoid and sagittal sutures are closed, which Ladybug's are at least partially.  Also according to my research, this can cause symptoms that can be mistaken for autism, and these symptoms can wax and wane depending on the ICP at the time.  Hm... sounds a lot like Ladybug to this mama.  I'm not positive she has this, but it's a big enough possibility that I feel this test really needs to be done.

If something is found wrong on this MRI, it is quite possible that we'll need to act quickly to correct it.  Since I'm 25 weeks pregnant now, this is why I'm pushing to get this done ASAP.  If my child needs surgery, I need to be there with her.  But I'm 5 hours away from any place that could do anything she needs, potentially 1,500 miles from a surgeon who will do what she needs. And traveling after 34-35 weeks is pretty frowned upon... On one hand, I'm upset that we were shorted an entire month thanks to a mistake, but on the other hand, had the mistake not been made I might not have felt the need to even do this test without the "local" doctor saying we needed to do it. Once we're on the other side of this, assuming there is another side, I might go into more detail about just what I've dealt with in the last two weeks.  Suffice it to say for now, it's been ugly.  

So that's what has consumed me most recently.  Turkey is just along for the ride, using her grin to endear herself to everyone but fully capable of bursting into a full blown lay down in the floor kick her feet fit at any moment her will is challenged.  Every child is challenging in their own way... parenting is a wild ride!  And Squirt, as far as I know, is just hanging out, packing on ounces and inches, practising to be a soccer player. Hopefully I'll have packed on a few pounds myself at my appointment tomorrow; just hope I haven't overdone it and sent myself into GDM!

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