Friday, August 31, 2012
Thursday, August 30, 2012
Back running the show
Overheard this afternoon:
"why is my desk so messy? I didn't leave it like that!"
" I'm so behind on all my chores!"
"Mom, can I start the bath for Liam?"
"would you just rinse his hair for me? I want to do the rest"
And after my catnap earlier--"wow, Mom, you look so much better!"
She is climbing into bed now all showered and happy after a lovely time opening all the truly generous packages waiting for her. Thank you, everybody!
We are still working out one of her endocrine med doses (her water-balance (DI) medicine) which shifted post surgery, and she remains on some temporary medicine for various discomforts, but they are keeping her comfortable.
Hopefully she will rest well tonight without all those beeps, labs and vitals!
"why is my desk so messy? I didn't leave it like that!"
" I'm so behind on all my chores!"
"Mom, can I start the bath for Liam?"
"would you just rinse his hair for me? I want to do the rest"
And after my catnap earlier--"wow, Mom, you look so much better!"
She is climbing into bed now all showered and happy after a lovely time opening all the truly generous packages waiting for her. Thank you, everybody!
We are still working out one of her endocrine med doses (her water-balance (DI) medicine) which shifted post surgery, and she remains on some temporary medicine for various discomforts, but they are keeping her comfortable.
Hopefully she will rest well tonight without all those beeps, labs and vitals!
Wednesday, August 29, 2012
Big night and huge morning
 |
| On her first walk in the hall to get hot-cocoa! |
She still had headaches throughout the day, but we started to find that her headaches were only when sitting up or standing. This is a sign that the fluid pressure is starting to increase appropriately.
A neurosurgeon explained why the fluid was needed in the following way ( I made a few modifications): imagine the soft spongy brain as a tiny boat floating in the skull in fluid (the cerebrospinal fluid). If the fluid gets too low (which they did purposefully) then the boat (brain) will bump against the skull and cause pain. Therefore as the fluid stops draining the fluid level will rise causing the brain to be more comfortable and stop hurting.
The clamped drain was still in her back and kept leaking onto her bed and back. The doctors decided to pull her drain out last night. Still no leakage through her nose!
This morning Lu woke up smiling and without a headache! Amazing! We are thrilled. Lu is watching sprout playing with happies you have brought and waiting on a hearty breakfast she ordered. She took a walk down the hall to get cocoa.
The plan is to observe her today for leakage of fluid and go home tomorrow!
Tuesday, August 28, 2012
Sleeping Beauty
Lucy spent the last two days in a continued haze of blessedly strong medicine, eating very little and usually in pain if awake.
Her pituitary medicines have been challenging to regulate due to post-surgery changes, but merely complicated to manage, not dangerous.
Her nurses have been kind and attentive, bringing scheduled IV steroids and antibiotics, pain medicines when she asks, keeping her stocked with ice-water and gatorade, taking her to the bathroom, drawing labs through her port so quietly she hardly wakes up, and many other cheerful services. Her doctors continue to be excellent, respectful of us and caring to Lucy.
Today her lumbar drain (the tube in her back draining fluid from her brain) was clamped in preparation for its removal; since no cerebrospinal fluid leaked from her nose (through the surgery site) over the course of the day, she was considered safe to have the drain removed tonight. The neuro team will then regulate her to make sure her brain's fluid cushion is intact, and she can go home likely Thursday morning.
We expect her pain to markedly decrease with the drain's removal, and even this evening with it only clamped, she talked and ate in a way she has not all week.
Richard is there tonight while I try to sleep for the first night at home. When my word-retrieval goes, it's time to realize the shift is over...
Despite the disorientation of this experience, we feel at home in the love all of you have shown us this week.
Her pituitary medicines have been challenging to regulate due to post-surgery changes, but merely complicated to manage, not dangerous.
Her nurses have been kind and attentive, bringing scheduled IV steroids and antibiotics, pain medicines when she asks, keeping her stocked with ice-water and gatorade, taking her to the bathroom, drawing labs through her port so quietly she hardly wakes up, and many other cheerful services. Her doctors continue to be excellent, respectful of us and caring to Lucy.
Today her lumbar drain (the tube in her back draining fluid from her brain) was clamped in preparation for its removal; since no cerebrospinal fluid leaked from her nose (through the surgery site) over the course of the day, she was considered safe to have the drain removed tonight. The neuro team will then regulate her to make sure her brain's fluid cushion is intact, and she can go home likely Thursday morning.
We expect her pain to markedly decrease with the drain's removal, and even this evening with it only clamped, she talked and ate in a way she has not all week.
Richard is there tonight while I try to sleep for the first night at home. When my word-retrieval goes, it's time to realize the shift is over...
Despite the disorientation of this experience, we feel at home in the love all of you have shown us this week.
Monday, August 27, 2012
Out of ICU
Lucy's MRI showed her brain was safe enough to move to the neurosurgery floor on Sunday afternoon.
The scan held little information, as expected, on the success of the tumor resection, due to the nature of the surgical approach. She'll have another one in a couple of months to decipher that.
But we are grateful to be in a quieter, more private space, and happy to lose several irritating tubes and cords.
She still primarily spends her time sleeping between headaches, but seems more herself when she wakes up: she can eat small amounts, expresses herself well, and enjoyed changing into a cute nightie.
Likely the lumbar drain will not be removed until tomorrow, and her headaches will persist until that is removed, but Tylenol with codeine tag-teamed with morphine keeps her comfortable. After the drain is removed, she will remain in the hospital for observation at least another day.
Many of you have asked about visiting. She is not up for chatting, games or movies yet, and the room is very small, but her parents would be cheered up by a quiet 10 minute friend anytime!
The scan held little information, as expected, on the success of the tumor resection, due to the nature of the surgical approach. She'll have another one in a couple of months to decipher that.
But we are grateful to be in a quieter, more private space, and happy to lose several irritating tubes and cords.
She still primarily spends her time sleeping between headaches, but seems more herself when she wakes up: she can eat small amounts, expresses herself well, and enjoyed changing into a cute nightie.
Likely the lumbar drain will not be removed until tomorrow, and her headaches will persist until that is removed, but Tylenol with codeine tag-teamed with morphine keeps her comfortable. After the drain is removed, she will remain in the hospital for observation at least another day.
Many of you have asked about visiting. She is not up for chatting, games or movies yet, and the room is very small, but her parents would be cheered up by a quiet 10 minute friend anytime!
Sunday, August 26, 2012
Thankful
This morning we have much to be thankful for:
-Lucy's first MRI without sedation, due to the lack of sedation doctors around on Sunday. If she couldn't stay still for the hour-long scan, she would have to wait until this afternoon, but she did great, with lots of pain meds and an American Girl movie on. (Results not in). She even gave a smile when she came out because she knew she had met a challenge.
-A beautiful sky out the hospital window.
-The IV morphine that gave Lucy a great night's sleep.
-The endocrine medicines which, as usual, completely replace her pituitary hormones so that her body functions properly and her labs, heartrate, blood pressure, and breathing are all perfect.
-Three teams of very smart people (icu, endocrine, and neurosurgery) following every data point.
-Attentive nurses
- This fun blanket on her bed when she got back from MRI
-Presents! And the ten minutes of alertness to enjoy opening them.
-Lucy's first MRI without sedation, due to the lack of sedation doctors around on Sunday. If she couldn't stay still for the hour-long scan, she would have to wait until this afternoon, but she did great, with lots of pain meds and an American Girl movie on. (Results not in). She even gave a smile when she came out because she knew she had met a challenge.
-A beautiful sky out the hospital window.
-The IV morphine that gave Lucy a great night's sleep.
-The endocrine medicines which, as usual, completely replace her pituitary hormones so that her body functions properly and her labs, heartrate, blood pressure, and breathing are all perfect.
-Three teams of very smart people (icu, endocrine, and neurosurgery) following every data point.
-Attentive nurses
- This fun blanket on her bed when she got back from MRI
-Presents! And the ten minutes of alertness to enjoy opening them.
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