Saturday continued to be a pretty normal day... other than chris wesiting a weird thing on his head... My parents came by to visit... Chris's roommate in 7Tower is pretty coool... 62 yr old man who like like he is 50-- had a stroke in his optic nerve...
Dr Harrison and the team came by and said that if the anti-seizure med is working, he can go home Sunday... We saw Dr Naylor again.. love him
They have him on Topomax... no episodes seen yet.. they did detect seizure activity on the recording.. but want to video him and monitor until Sunday morning
Dr Harrison says Chris can go home Sunday as long as there are no more episodes
I go home Saturday night.. I had been there since 430pm Friday.. more than 24 hours
Sunday morning, Chris calls me and tells me they will be disconnected his head and discharging him... I go pick him up after lunch time and they prescribed him the topomax and gave him dilaudid for home... to ween him off the patch..
Remember, Chris took the fentinol patch off cold turkey and after a month of patch, thats not good.. they felt he was going thru withdrawals from it, so they are having him wind down...
We went home... I had some issues with the CVS folks, but thats my own lil frustration with the guy who didnt call me when he didnt have the right dose of his meds.. so i had to spend extra time there when i went back to get some answers and things straightened out
Its now Monday evening... Chris is home resting.. feeling better... and we will watch dancing with the stars tonight ;) yay!
We have an appointment tomorrow morning (Tues 8am) with Dr Strair.... follow up appointment.. not sure if we will find out about donor or transplant schedule.. but if we do, i will post ASAP tomorrow
Feel free to call or text me tomorrow after 10am to get info
Friday mid-day Chris has a spinal tap (one last one before transplant just to make sure there is no fungus or anything) and he has an MRI with anastesia after that on Friday to check the rest of the spine ...
Tomorrow, we will get more info on petscan and whether we need mugascan and or pulmonary tests again
Until tomorrow... Goodnight!!
xoxox Jenn & Chris
Monday, November 24, 2008
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