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.

Conner, 2.5 weeks after. 

It's Done

Conner had a craniotomy on 8-July-2005. It lasted about 12 hours. Cysts were drained (2 of them) but membranes were too adhered for the neurosurgeon to get them out.

He took about 4 and a half days at Mott Children's Hospital in Ann Arbor, Michigan, to recover enough to go home. When he woke up he was very confused and disoriented, and had to be restrained to keep him from taking the bandages off his head, but by 36-48 hours post-op, he was back to himself again.

I am not happy about the pieces left behind, and we now have to face the big question of radiation therapy. I will be using online research coupled with talks with his neurosurgery team regarding this topic. The MRI came back clean, but I need to discuss what they saw a bit further with them, since they spoke to my ex-wife and she was kind of vague.

Big thanks to the pediatric neurosurgery team at the U of M Medical Facility, and a big thanks to his ICU nurses. What a group of compassionate, yet tough as nails, people! Special thanks to Marcy, Regina, Mary, Jennifer, and Sherri in Pediatric ICU pods B and C.

Big thanks to all of Conner's friends and family who came out to support him, especially his new relatives, the Graneys.

And a very special thanks to my wife Holly, for being there for me and for Conner, and for the unconditional love my sweet little Mara had for me when I'd come hope for breif visits.