Surgery Cancelled

After a rough few days in a rather ridiculous hospital, Avery will not be having surgery today.  We were admitted on Saturday with the plan to enlarge her ventricles by slowly shutting off the flow of her shunt.  However, after an MRI this am we discovered that the ventricle sizes have not changed a bit.  This is perplexing to the surgeon and us.  In theory if your drain is clogged and you shut off the hose you have running out of the sink to drain the water, than the water should just build up in the sink.  This isn't happening, so now the question is  is there a blockage?  At this point we are not certain what they want to do and are waiting for the team to discuss our options and make a decision as to what the best thing is to do moving forward.  Surgery without enlarged ventricles is much more invasive and comes with a higher mortality rate.  We are really hoping that other options are a better fit and that she doesn't have to once again go under the knife.  As we hear more I will keep you posted.

In the mean time Avery has had a crappy few days.  The hospital is lacking in food for kids, activities for kids, and nurses that regularly access ports.  As a result, they attempted to access the poor kid 3 times, with 3 different nurses last night and all failed.  This of course left us with a kid that screams when you go at her port.  Thanks people.  She never even flinched prior and now you've ruined that.  They then of course put an iv in her hand -- which sucks when all you can do is crawl.  Then the anesthesia team didn't clamp this line after her MRI and as a result it clotted....meaning it had to be pulled out.  So now we have no line and in the event that she needs to be hooked up for any reason -- we have to go through all that once again.  Lovely. 
Since they decided to first access her at 9 pm at night, and we had all the drama we did - it meant Avery didn't go to bed until almost 1 am.  Guess what time Neuro makes rounds?  4 am!  And they wake you up for this.  And then again at 5 am ...and 6:15 am....So needless to say she way pretty pissed when she woke up from the MRI.  Good thing she doesn't hold grudges.  Unfortunate for the staff that mommy does.  Luckily Nana is here now to help Mommy in the Psycho Mommy state  - so I might not be so mean to everyone - can't promise that though.  On a good note, we really like our Neurosurgeon.  He appears to be very intelligent and confident and looking out for Avery.  I guess in the big scheme of things, he's the one you want to be good most of all.  

The picture was taken prior to her MRI - they pasted these gems on her head to use as markers in the MRI and surgery....this was one of our wake up calls at 6:15 am.  Didn't seem to bother her though.

Jenn