A shunt malfunction...

I have been asked lately what does the shunt malfunction look like? How did you know it wasn't working?  What do they do to fix it? Then the opposite side is, but I just saw her an hour ago and she was doing fine and looked great!  Yup, welcome to the world of hydrocephalus, where the uncertain is certainly going to happen!

After such a fantastic weekend, I guess the polar opposite had to take affect, after all the whole yin/yang thing we have going on in the house has to keep its balance somehow right?  (note sarcasam please)   So where am I going with all of this you may ask?  Well, Willow had her first shunt malfunction since we left the hospital in July.  So what did it look like this time?  I am not sure really.  She had been battling an ear infection for about 3 weeks now (Monday will be a month); and her last MRI was done in November.  So we had a good baseline of what her brain looks like 3 months post surgery and it was wonderful.  But back to the ear infections.... (sorry I always get sidetracked).  So she was battling ear infections for 3 weeks, well that is not a huge deal, nor is it an indication of anything, after all a lot of children get an ear infection.
So how do we know?

Well after the fun of her party on Saturday her and I were both exhausted and went to bed early, Sunday she played well during the day and became fussy at night.  Well again I have been told that is normal when fighting an ear infection.  Sunday during the day we noticed she was starting to get a low grade fever, well again ear infection.  When it came to bed time though that night, she was once again fussy.  I held her all night.  Monday comes and she once again seems fine during the day while playing. We even had friends over that morning in honor of my aging yet another year (some call them birthday's! LOL)  So Monday evening rolls around and while we are out shoe/boot shopping for the kids I just notice how warm she is beginning to feel.  The other thing is that on Monday she took a couple of extra naps which is not her norm.  She also started vomiting at about 5 pm, so I sat in watchful mom mode.  That night I put all the other children to bed, and then sit down myself with Willow in my arms to watch The Sing Off (my little brainless indulgence) at 8 pm.  After 15 minutes she starts fussing, and I mean really fussing, (and I am certain it had nothing to do with the choice of television programming I was watching!).  So this goes on until 10 pm when she finally screams herself to sleep. So I was beginning to worry a bit, wondering what if something else was wrong beside her ears?  So, I call the on call nurse at her peds office and let them know what was going on.
It was decided we go to ER.  I felt that it was still ear infection related and that for some reason yet again the antibiotics were not working.

Well, around 1 am they order a CT scan, and it came back that her ventricles were larger than the November scan, but smaller than the July scan... So that is an automatic admittance into the hospital.  Great..
By 4 am, we are up in a room on the 7th floor, and I am really at a loss as to what is going to happen.  The doctors come in and check her over, and tell me that Dr. Foody's team (the neurosurgeon) knows we are there and has looked at the scans and will be in to let me know what we are going to do.  So, we wait.
Well, they decided to do a nuclear medicine study, where radio-active die is injected into her shunt and it follows along the shunt path to see what happens. We are looking at this point for any bright white blobs (meaning a blockage) or for the white line to empty into a pool in her belly.  Fun huh?? Yeah I thought so too.  So, we find 2 small blockages in her tubing in the belly, and we are sent back upstairs with the official report of "everything is flowing and looks good"... So when we are upstairs the news comes back that the fluid did empty into her belly as expected, but that there are 2 small blockages, so we are staying the night and an MRI is scheduled for first thing in the morning.

Wednesday morning, they come get us at 8:45 for the MRI.  They gave her propophel to put her to sleep, it is  so unnerving to see how quickly she fell asleep that day.  :(  But the MRI news came back after lunch that the ventricles are small again!! WOOHOO!! The die test can actually break up and push thorough small protein blockages some times, and they are assuming that is what happened this time. So, we got to go home on Wednesday afternoon.

So, after all of this, what does a shunt malfunction look like?  Well, most doctors will tell you to look for headaches (not sure), vomiting (check), sleepiness (check), irritability (check), swelling (none), seizures (none)... So while she had a few, they were so small in the range of what could be going on, that when we were admitted, I was really scared.  I had no thoughts that it was truly shunt related, I was going with the thought that the stupid ear infection was to blame.  Now we must assume (according to her doctors) that if she has an ear infection, she may have a shunt malfunction as well. :(

So my friends, in the change of an hour or so, a shunt malfunction can happen, and we never really know what to look for.  Please just keep Willow and all the other children who fight Hydrocephalus in your thoughts and prayers that we can all have a quiet holiday season no matter how we celebrate it.  :)


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