Yesterday I met with Dr. Mazjoub and his fellow about using the DDAVP again with Caroline to treat her DI. She got an injection of it around 10:50AM and her blood work was just done at 2PM. I am waiting now to hear the results for her sodium and potassium; if the docs balanced her fluids correctly (and I am sure they did because they are super smart here and know what happened last time) then she should stop peeing so much but not get water logged in the process. The way we would use the drug at home would be to hold off on her fluids before administering the drug and while it is working and then when it starts tapering off she can eat/drink again. Most likely we would give her the shot at night before bedtime... of course she is a baby so she doesn't know yet that she shouldn't eat all night long. They docs said that this would be easier to manage once she begins eating solid food.
The ophthalmologist is coming soon to re-check her eyes and optic nerve and the endocrine docs will be here at 2:30 to discuss the new MRI that was done last night. Caroline was working her way up on feeds and got to 15CCs every 3 hours but starting spitting them up so they went back down to 8CCs - especially important when they are micromanaging every drop of fluid going into her body. (Meaning they don't want her to spit up her food which would have an impact on the test.)
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Okay, endocrine was just here.
http://www.ninds.nih.gov/
MRI shows that Caroline has this... Neurology will be taking a look and getting back to me. Genetics will also now be getting involved. Ophthalmology should be here now to take a look at her eyes. Endocrine will continue to check in throughout the day with her DDAVP trial. The drug was administered at 11AM and her labwork was done at 2PM. her sodium dropped from 144 to 137 which the doc said is in the normal range. To be safe they are doing another lab right now. If her sodium drops further they will reduce her fluids and possibly give her some sodium...that's it for now.
The ophthalmologist is coming soon to re-check her eyes and optic nerve and the endocrine docs will be here at 2:30 to discuss the new MRI that was done last night. Caroline was working her way up on feeds and got to 15CCs every 3 hours but starting spitting them up so they went back down to 8CCs - especially important when they are micromanaging every drop of fluid going into her body. (Meaning they don't want her to spit up her food which would have an impact on the test.)
_____________________________________________________________________________________
Okay, endocrine was just here.
http://www.ninds.nih.gov/
MRI shows that Caroline has this... Neurology will be taking a look and getting back to me. Genetics will also now be getting involved. Ophthalmology should be here now to take a look at her eyes. Endocrine will continue to check in throughout the day with her DDAVP trial. The drug was administered at 11AM and her labwork was done at 2PM. her sodium dropped from 144 to 137 which the doc said is in the normal range. To be safe they are doing another lab right now. If her sodium drops further they will reduce her fluids and possibly give her some sodium...that's it for now.
Thinking of you, Aimee, and sending love your way!
ReplyDeleteLove & prayers for you all constantly!! xoxo auntie laura
ReplyDeleteCan't make too much of this review article on SOD but it does say the earlier they can diagnose it, the better for the child! Glad to know she has such excellent care.
ReplyDeletehttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987262
Glad you have such a great team of doctors and are getting some answers now. We're keeping you in our thoughts.
ReplyDeleteLove from France. Everyone is thinking of you.
ReplyDeleteAimee, I am just so glad you have such a good team of doctors behind you! Am thinking of you, Caroline and Tyler every day of this journey.
ReplyDeleteWhat a little fighter she is.
Love to you all, Joanie
Aimee, Marie and I have been praying all along and have an international prayer network going focused on Caroline, plus you and Ty, and all the medical people treating Caroline. From Canada to Ireland to Brazil and the U.S., people who don't know you are specifically praying for you all. We're all behind you. Lots of love, "Uncle" Rick and "Aunt" Marie Turcotte
ReplyDelete