Apologies in advance for the lack of updates and failure to respond to emails! We have just gotten internet access back after a few days without. It's been an exhausting couple of days, run through the ringer and back around again.
At clinic yesterday morning, Vivi presented with a fever. Because of the recent brain surgery and her young age, even a momentary fever that resolved without intervention was treated very seriously. Ultimately she was admitted in St. Jude overnight, where she remains, and due to some signs of an infection surgery was delayed.
At this point, Vivi has a high white blood count and some other oddities. However, examination of her cerebrospinal fluid (CSF) is initially normal, with none of the red flags that would suggest an infection. She has remained afebrile all day. A head CT scan showed no sign of inflammation or infection. In order to avoid continuing to let this baby stand in for a pincushion, they placed a relatively simple, temporary femoral catheter. This will be removed on Friday.
We had an interesting moment today, where medical staff insisted Vivienne was in pain and gave her morphine, much to my dismay. As she was smiling shortly before the administration of morphine, noted to be pleasant and relaxed (although hungry because she was NPO in preparation for potential surgery), with no grimacing or clenching, the only evidence of pain reported by the medical staff was high blood pressure and increased respiration rate. Since she has shown these (expected) two symptoms for a week post-operatively, and because she is admitted to score zero on the FLACC scale (indicating she is in no pain). When I questioned the reasoning for giving the baby morphine, responses seemed a bit defensive. I certainly want to err on the side of Vivi's comfort, and do not want her to experience any pain, but I don't see the benefit to medicating her if it's not needed.
I anticipate this issue will develop and change over time, and be a recurrent topic of discussion with doctors. I hope to find balance by listening, asking questions, discussing openly, and sharing my concerns without too much of an agenda.
At this point, we are just observing her for signs of infection, however she is doing well. A happy, smiling, content baby. She enjoyed some dinner, played awhile, watched some colored toys, listened to a Goodnight Moon, and fell asleep shortly after being tucked in. Mom tested the level of her relaxation by putting speeches from the DNC on tv, and Vivi remains content. I think she can withstand anything.
Tomorrow and future days should be calmer, as we settle in, get the hang of things, and develop a division of labor. Surgery for the kidney and some lymph node removal with placement of the Hickman Line is scheduled for Friday assuming Vivi remains healthy enough.
Apologies in advance for the lack of updates and failure to respond to emails! We have just gotten internet access back after a few days without. It's been an exhausting couple of days, run through the ringer and back around again.
At clinic yesterday morning, Vivi presented with a fever. Because of the recent brain surgery and her young age, even a momentary fever that resolved without intervention was treated very seriously. Ultimately she was admitted in St. Jude overnight, where she remains, and due to some signs of an infection surgery was delayed.
At this point, Vivi has a high white blood count and some other oddities. However, examination of her cerebrospinal fluid (CSF) is initially normal, with none of the red flags that would suggest an infection. She has remained afebrile all day. A head CT scan showed no sign of inflammation or infection. In order to avoid continuing to let this baby stand in for a pincushion, they placed a relatively simple, temporary femoral catheter. This will be removed on Friday.
We had an interesting moment today, where medical staff insisted Vivienne was in pain and gave her morphine, much to my dismay. As she was smiling shortly before the administration of morphine, noted to be pleasant and relaxed (although hungry because she was NPO in preparation for potential surgery), with no grimacing or clenching, the only evidence of pain reported by the medical staff was high blood pressure and increased respiration rate. Since she has shown these (expected) two symptoms for a week post-operatively, and because she is admitted to score zero on the FLACC scale (indicating she is in no pain). When I questioned the reasoning for giving the baby morphine, responses seemed a bit defensive. I certainly want to err on the side of Vivi's comfort, and do not want her to experience any pain, but I don't see the benefit to medicating her if it's not needed.
I anticipate this issue will develop and change over time, and be a recurrent topic of discussion with doctors. I hope to find balance by listening, asking questions, discussing openly, and sharing my concerns without too much of an agenda.
At this point, we are just observing her for signs of infection, however she is doing well. A happy, smiling, content baby. She enjoyed some dinner, played awhile, watched some colored toys, listened to a Goodnight Moon, and fell asleep shortly after being tucked in. Mom tested the level of her relaxation by putting speeches from the DNC on tv, and Vivi remains content. I think she can withstand anything.
Tomorrow and future days should be calmer, as we settle in, get the hang of things, and develop a division of labor. Surgery for the kidney and some lymph node removal with placement of the Hickman Line is scheduled for Friday assuming Vivi remains healthy enough.