29 days of separation from being 4 years surgery free and having to start the clock all over again.
Feb 7, started this whirlwind tour of what is going on with Willow. Seizures, testing, headaches, MRI's, nuclear med studies, vomiting, then the flu to boot!! Well, it ended yesterday with her 13th shunt surgery - only 29 days before we would celebrate 4 years surgery free.
Yesterday, her doctor revised the shunt; so he tested the pieces during surgery and found that the valve was not working. Something Jon and I had figured since she was getting horrible headaches while laying down in her bed. It just took a lot to get her to OR, because after all; she is Willow - our little ray of sunshine, and she still smiles and cracks jokes and tells stories while in the Pre Op room.
So, to you Mr. Doctor know it all/by the books; please take note: My daughter was in shunt malfunction and still smiled, did not have sun setting of the eyes, did well (and passed) the neurological testing, but guess what? Her vents went from slit like to 10 mm in just a week's time. Even at 10 mm, she laughed, told jokes and had people fall in love with her. Why? Because she isn't a book, she is a human being, and the brain is the least studied body part in the medical field?
Why? Because no one wants Dr. Know it all poking around in their brain.
It took a lot of misdiagnosing, and passing off as other things (flu/migraines), and I understand, there may well be a day when she has these symptoms again, and it could well be just the flu or migraines. But something needs to be said for mommy instinct - this mama bear knew it wasn't just the flu, and thankfully I do my research and am not afraid to ask tough questions to these doctors. After all, it isn't a book they are dealing with. It is my daughter.
 |
| In the ER 3/7 |
 |
| In her room, waiting for surgery time to be given |
 |
| Post surgery 3/8 |
 |
| Post Surgery 3/7 |
 |
| Her bandages were made into hearts. |
Comments