Another concern??
As I stated in my last post, it is indeed National Hydrocephalus Awareness month! :) A month dedicated to the knowledge of hydro. So far this week has been a great week, one filled with joy in sharing so many facts. One with new additions to the Michigan PHF page on Facebook (which means more awareness)! A week where Willow's story will be shared tonight on Fox17 news during their Pay it Forward segment (5 and 6 pm news casts), and also a week where we are reminded in this family how crazy hydro can be...
Willow went to the ENT yesterday to have them confirm her ear infection I guess. Really to make sure it wasn't too bad, and the meds were working, and to hopefully see if the ear drum ruptured or not. Well they also did a pressure test of both ears and as expected there is pressure behind the ear that has the infection - but the surprise to both the ENT and myself (once I heard about this after coming home from work) was that there is pressure behind the good ear too. So we call the neurosurgeons office just to see what they think about it all. If you remember before her tubes were placed at the end of January this year, she had a lot of ear infections and with each one there was also a shunt issue. Now what we don't know is this: are ear infections a sign for her that something is wrong with the shunt, or is it always a coincidence that they happen at the same time? So I called to be safe - and after explaining everything to the nurse, she pages Willow's neurosurgeon (who by the way is at the hospital it was Thursday ped's surgery day), and within 10 minutes she was calling me back saying that he is concerned about the pressure behind both ears, and that he wants a nuclear med study done (the die test) and a rapid MRI (never had that done so we shall see how that works). Now because her only other symptom at this time is an extra nap every day for the last two weeks, he will schedule the tests as outpatient so now today I am waiting for the call to tell me when (they said it will either be today or Monday) that we have to take her in for these tests.... I really was hoping he would tell me it was nothing to worry about and I was being overly cautious and such... but when we wants those tests run - there is reason to worry now.
So while I am sharing these facts with you this month, and we are all enjoying our children being back in school (hurrah) and other such back to fall activities - I just ask that during this month you also remember that Hydrocephalus is horribly unpredictable and something as simple as an ear infection, a common cold, a headache, a slightly more sleepy day can all lead to the next moment a surgery being done. Hydrocephalus can be seen as the 'silent condition' or the 'hidden condition' because in some of the more high functioning people with hydro (such as Willow), it does not appear that anything is wrong. Even now with an ear infection raging in her right ear, she is not doing much more but sleeping a little bit more... yet her doctor knows her well enough to be concerned.
A photo from this last week with Willow and her new friend 'ditty' (kitty):
Willow went to the ENT yesterday to have them confirm her ear infection I guess. Really to make sure it wasn't too bad, and the meds were working, and to hopefully see if the ear drum ruptured or not. Well they also did a pressure test of both ears and as expected there is pressure behind the ear that has the infection - but the surprise to both the ENT and myself (once I heard about this after coming home from work) was that there is pressure behind the good ear too. So we call the neurosurgeons office just to see what they think about it all. If you remember before her tubes were placed at the end of January this year, she had a lot of ear infections and with each one there was also a shunt issue. Now what we don't know is this: are ear infections a sign for her that something is wrong with the shunt, or is it always a coincidence that they happen at the same time? So I called to be safe - and after explaining everything to the nurse, she pages Willow's neurosurgeon (who by the way is at the hospital it was Thursday ped's surgery day), and within 10 minutes she was calling me back saying that he is concerned about the pressure behind both ears, and that he wants a nuclear med study done (the die test) and a rapid MRI (never had that done so we shall see how that works). Now because her only other symptom at this time is an extra nap every day for the last two weeks, he will schedule the tests as outpatient so now today I am waiting for the call to tell me when (they said it will either be today or Monday) that we have to take her in for these tests.... I really was hoping he would tell me it was nothing to worry about and I was being overly cautious and such... but when we wants those tests run - there is reason to worry now.
A photo from this last week with Willow and her new friend 'ditty' (kitty):
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