Hard Day that Got Better
Hi Everyone,
Our day started out poor with Grace first waking at 11am very lethargic and unable to sit up in bed. Her eyes were more crossed than yesterday so this with the lethargy lead Ian and I to fear that Grace had sever pressure on the brain that she was unable to communicate to us. Her HemOnc Doc had decreased her Dex (steroid to decrease swelling/pressure on the brain) to half of what it was since Grace was very antisocial and more irritable than normal during their interactions on Monday (Dex causes irritability and mood swings... aka tantrums for a 2 year old). However Ian and I were in fear that this may have been a mistake for we would rather a moody Grace then one in such pain she is unable to lift her head. We consulted with her palliative care Doc who suggested that she may also be constipated (due to the amount of codeine she is on) and to try a laxative. We did. It didn't to much, so we upped her Dex to what it was and gave her an extra dose of codeine and within an hour she was out of bed (2:30pm by the time everything was said and done). We played for and hour before her palliative care Doc showed up to personally assess the change in events and then Nana and Papa brought Grace to feed the duck and rabbits at the park and go for a long walk while Ian and I discussed details with the doc. We are going to increase Dex to 3mls a day, smaller but scheduled does of codeine every four hours with "breakthrough" doses if need be (hoping this change of codeine admin helps with her constipation), laxative twice a day for two days... if we get no action then we move to a supository, and chemo until chemo seems to be negatively affecting her quality of life. I hope these changes result in more time out of bed than what we experience today. We were quiet caught off guard since she was just dancing to her new favorite song "Promiscuous Girl" by Nellie Furtado and Timberland when they performed for the Teen Choice awards on Sunday night. We've been told it can happen this quick but still hard to get your head around. Got lots of calls and notes of support to day after yesterdays horrific news. Thanks to each of you. It is truly what refills our tanks to take on another day in our less than idea world. Let's hope the new med schedule is a hit.
Tomorrows a new day.
Les
Our day started out poor with Grace first waking at 11am very lethargic and unable to sit up in bed. Her eyes were more crossed than yesterday so this with the lethargy lead Ian and I to fear that Grace had sever pressure on the brain that she was unable to communicate to us. Her HemOnc Doc had decreased her Dex (steroid to decrease swelling/pressure on the brain) to half of what it was since Grace was very antisocial and more irritable than normal during their interactions on Monday (Dex causes irritability and mood swings... aka tantrums for a 2 year old). However Ian and I were in fear that this may have been a mistake for we would rather a moody Grace then one in such pain she is unable to lift her head. We consulted with her palliative care Doc who suggested that she may also be constipated (due to the amount of codeine she is on) and to try a laxative. We did. It didn't to much, so we upped her Dex to what it was and gave her an extra dose of codeine and within an hour she was out of bed (2:30pm by the time everything was said and done). We played for and hour before her palliative care Doc showed up to personally assess the change in events and then Nana and Papa brought Grace to feed the duck and rabbits at the park and go for a long walk while Ian and I discussed details with the doc. We are going to increase Dex to 3mls a day, smaller but scheduled does of codeine every four hours with "breakthrough" doses if need be (hoping this change of codeine admin helps with her constipation), laxative twice a day for two days... if we get no action then we move to a supository, and chemo until chemo seems to be negatively affecting her quality of life. I hope these changes result in more time out of bed than what we experience today. We were quiet caught off guard since she was just dancing to her new favorite song "Promiscuous Girl" by Nellie Furtado and Timberland when they performed for the Teen Choice awards on Sunday night. We've been told it can happen this quick but still hard to get your head around. Got lots of calls and notes of support to day after yesterdays horrific news. Thanks to each of you. It is truly what refills our tanks to take on another day in our less than idea world. Let's hope the new med schedule is a hit.
Tomorrows a new day.
Les
posted by Lesley at 11:04 p.m.
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