About 3 weeks out
Today were appointments with the Dr. Garton, the ped. neurosurgeon, and the ped. endocrinologist. We saw a different ped. endo, and I didn't like that.
THE MEDS
Anyway, Conner's been doing great, but they think he might need a little dose of DDAVP at bedtime to help with the diabetes insipidus. He'll be taking ~ 1/4 of a standard tab of DDAVP and only at night. He's been off the DDAVP for 5 days, but has been peeing alot at night, but during the day he's been ok. Sodium levels were checked, but I haven't heard the results as of yet.
Cortef is another story. He's been acting tired and complaining of headaches, and they decided to bump his cortef up to 2 doses of 5 mg and one dose of 2.5 mg during the day. He seems to be responding well to it, but, over at my place he was doing well on 2.5/2.5/5...he doesn't sleep nearly as well over at his mothers than at my place, though, for whatever reason.
Thyroid: Not doing well, he's on 50 mcgs daily of T-4.
Not quite pan-pituitary yet, but almost. No need to mess around with GH or androgens right yet, said the endo. Plus, they think he might come back from the DI. The endo, a Dr. Chen, mentioned that it takes much longer for cortisol production to start back up. I haven't done all my research on cortisol yet, but you can bet it's on the agenda.
Radiation is probably going to trash his pituitary and make him pan-pituitary, but from all indications, his hypothalamus is intact, and the neurosurgeon says it should stay intact. That makes me rest a bit easier.
The Neurosurgeon:
Doing very well, he says. He told me what I needed to know about the pre and post operative MRIs. The membranes of the cysts weren't visible on the postop MRI, but the couldn't be removed. The solid mass was visibly diminished, but some was left, because it was adhering to the visual cortex and the carotid artery...thus the radiation recommendation.
Conner's been cleared to swim in pools, to shower, to play outside, and run around, and to play in a "noncontact" manner. He's got screws and a small plate in his head now, and that needs another 3-4 weeks to heal up. His vision is "20/20 or better" but that doesn't rule out spots where it's been affected, but that needs a neuro-opthamologist to sort out.
Overall, doing very well. All I can say is that he's a damn brave kid and I am very proud of him and his attitude towards this.
THE MEDS
Anyway, Conner's been doing great, but they think he might need a little dose of DDAVP at bedtime to help with the diabetes insipidus. He'll be taking ~ 1/4 of a standard tab of DDAVP and only at night. He's been off the DDAVP for 5 days, but has been peeing alot at night, but during the day he's been ok. Sodium levels were checked, but I haven't heard the results as of yet.
Cortef is another story. He's been acting tired and complaining of headaches, and they decided to bump his cortef up to 2 doses of 5 mg and one dose of 2.5 mg during the day. He seems to be responding well to it, but, over at my place he was doing well on 2.5/2.5/5...he doesn't sleep nearly as well over at his mothers than at my place, though, for whatever reason.
Thyroid: Not doing well, he's on 50 mcgs daily of T-4.
Not quite pan-pituitary yet, but almost. No need to mess around with GH or androgens right yet, said the endo. Plus, they think he might come back from the DI. The endo, a Dr. Chen, mentioned that it takes much longer for cortisol production to start back up. I haven't done all my research on cortisol yet, but you can bet it's on the agenda.
Radiation is probably going to trash his pituitary and make him pan-pituitary, but from all indications, his hypothalamus is intact, and the neurosurgeon says it should stay intact. That makes me rest a bit easier.
The Neurosurgeon:
Doing very well, he says. He told me what I needed to know about the pre and post operative MRIs. The membranes of the cysts weren't visible on the postop MRI, but the couldn't be removed. The solid mass was visibly diminished, but some was left, because it was adhering to the visual cortex and the carotid artery...thus the radiation recommendation.
Conner's been cleared to swim in pools, to shower, to play outside, and run around, and to play in a "noncontact" manner. He's got screws and a small plate in his head now, and that needs another 3-4 weeks to heal up. His vision is "20/20 or better" but that doesn't rule out spots where it's been affected, but that needs a neuro-opthamologist to sort out.
Overall, doing very well. All I can say is that he's a damn brave kid and I am very proud of him and his attitude towards this.
posted by Shaf @ 7:44 PM
1 Comments:
At 12:20 PM,
Anonymous said…
Your son sure is blessed to have such an involved and informed father.
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