The exhaustion sets in...
I know this feeling now all too well, and yet it is not a friend of mine. Sheer exhaustion, emotional, physical; I am just spent.
Willow was admitted yesterday to the hospital again, and had surgery again... The difference this time, was we were admitted before getting here, and I got to skip the ER! We had a follow up with Dr. Foody, after our Sunday trip to ER. On Tuesday he did a shunt series (x-rays of her head to belly to track the shunt itself to check for breaks), and a nuclear med. study (the die test). Well the nuc. med study showed no inter ventricular activity. Basically she is not draining any fluid. Now one would immediately think that her vents would be huge, well they aren't. And her behavior is sporadic at best. Now to make it fair, she has been battling a low grade fever for a month and half now, and has had sporadic vomiting for about a month as well, so with those pieces plus the pieces of her CSF from the nuc. med study (she has an elevated WBC count and eosinophils in her CSF.) they knew they had to operate. :/
So we got admitted around 7 pm last night, and spoke with Dr. Foody around 8:30 and he is really just as confused as we are about her symptoms and really behavior being so well, yet the tests showing so differently. He said to Jon and I last night that it is like taking a multiple choice test, and the right answer is usually in your gut feeling. While Jon and I were not totally reassured by that answer, I understood what he meant. He ended up externalizing the shunt through the belly, so the valve is still placed in her head. We have never had this surgery done before, but it is less invasive than the normal route we go, and we are hoping to see how she responds to everything.
Well, we finally get to a room around 11:30, and the nurses are done with their thing around 1 and I can finally try to get some sleep... Uggh, try was the operative word there. Vital checks were done ever 1/2 hour and I am left feeling so tired that I bet a gallon of coffee would not help me out today. The other worry of today is Willow has not recovered and bounced back like she normally does. She is super sleepy. :( She woke up around 9:15 for vital checks, nursed, then ate a piece of toast. Seemed to wobble while sitting so I laid her down and she fell asleep again. She has been sleeping ever since. :(
I am horribly worried that she is getting worse now, despite the fact that we do have some flow from her drain. Oh hydrocephalus, why must you be so confusing and daunting.
This was Willow the few minutes she was awake eating her french toast. She appears fine, then she just crashed. :(
So we got admitted around 7 pm last night, and spoke with Dr. Foody around 8:30 and he is really just as confused as we are about her symptoms and really behavior being so well, yet the tests showing so differently. He said to Jon and I last night that it is like taking a multiple choice test, and the right answer is usually in your gut feeling. While Jon and I were not totally reassured by that answer, I understood what he meant. He ended up externalizing the shunt through the belly, so the valve is still placed in her head. We have never had this surgery done before, but it is less invasive than the normal route we go, and we are hoping to see how she responds to everything.
Well, we finally get to a room around 11:30, and the nurses are done with their thing around 1 and I can finally try to get some sleep... Uggh, try was the operative word there. Vital checks were done ever 1/2 hour and I am left feeling so tired that I bet a gallon of coffee would not help me out today. The other worry of today is Willow has not recovered and bounced back like she normally does. She is super sleepy. :( She woke up around 9:15 for vital checks, nursed, then ate a piece of toast. Seemed to wobble while sitting so I laid her down and she fell asleep again. She has been sleeping ever since. :(
I am horribly worried that she is getting worse now, despite the fact that we do have some flow from her drain. Oh hydrocephalus, why must you be so confusing and daunting.
This was Willow the few minutes she was awake eating her french toast. She appears fine, then she just crashed. :(
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