Tuesday, 17 April 2012


I seem to have hit a 'fragile' period, I'm hoping it is just hormones and/or extreme exhaustion.  I'm not feeling depressed per se but am certainly feeling blue a bit more than usual.  What is getting me is this persistent insomnia!  I've tried melatonin, warm milk, breathing, stretching, ativan, etc. but to no avail.  At first (this is going back months now) I would fall asleep on a dime, I just couldn't stay asleep.  Now I can't seem to shut down at all, even when I do sleep I have the most bizarre dreams!

I know that I am feeling the strain of having B's surgery(ies) approaching and I was trying to explain to Michael that while I know they are necessary, there is nothing that will miraculously bring him home.  We have all of these procedures, which he needs, but in the end we still have all these problems it seems.

Mr.B has his Nephrology scan tomorrow to see if he is in fact having reflux and I've got the wonderful picture in my head of the last time we had a procedure in Radiology with him strapped to a board that resulted in his Code Blue.  I told the Nephrologist, as soon as he suggested the test, that I would not like a resident to do the procedure.  He probably thinks I'm a bit of a whack-a-doodle but I just think Braeden is too fragile to be a 'learning' experiment.  That sounds a bit harsh I suppose!

I guess what it boils down to is that we are more than five months into this and are no closer to any answers.  We just keep adding to the list that is Braeden.  I know I joke about him having 'Braeden Syndrome' but really it seems that way some days, that we are all alone in this.  Not alone as in no support, (of that we have lots and are eternally grateful!), but alone medically.  The hospital is wonderful, the Dr's and the Nurses fantastic but there is only one Braeden, only one.  Go down the list, check one off and find three more to add...

The latest issue we are facing is he seems to not be digesting (possibly not absorbing) fat.  His stools have been bizarre for a week now and what it seems to be is that they are very 'fatty'.  They are doing a series of tests to look at liver function but his NP assured me he shows no other signs of liver issues....oh Braeden, my sweet boy how you stress your Mommy!  He has also dropped 1/2 pound in the past week but I am assuming (hoping) it was due to the Klebseilla and being sick.

I guess this is just the road that you go down when you have a child with a rare genetic disorder that is yet to be diagnosed.  Have you ever tried to research genetic disorders?  There are thousands, thousands!  I need to find a website that I can just enter in all of his anomalies and it kicks out a diagnosis...hmm, guess I should be careful of what I ask for, sometimes that idea of a diagnosis seems even scarier! 

Back to bed I go with the visions of sheep jumping or sugar plums or something in my head that isn't medically related. 

Thanks for listening, guess there are days when the world seems a bit heavier than others.


Anonymous said...

This would truly be a very stressful time and situation for any parent-most of us can only imagine the stress and worry you feel. Have you considered asking your docotr for a sleeping pill-perhaps you don't want to use all the time but for periods like this so you can get the rest you need for your own health and to care for your family and prepare for little B's surgery. Do take care and all the best!

Anonymous said...

Heh Lia,
You need to drink more water.
You are dehydrated. Take care.