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Next Step ...Ommaya


7/20/2009
Journal, Blood - 7/20/2009
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We had precious little sleep last night again. Jaymun's IV pulled out (he has no central line anymore - only peripheral).
Since they were using the IV for his anti-seizure medication they needed to start another IV much to Jaymun's great displeasure.

Then we just got settled back to sleep around 3:00 AM when Jaymun decided it was cool every 20 minutes or so to perk up and say "Hey Mommy?" I was sleeping next to him in bed but he wanted Mommy.

This morning he started the day with "Thomas the Train". Dr. Kelly was happy to see him laughing in bed. Nurse Bonnie was his nurse today. He got a birthday present from one of his past resident doctors ...thank you Yvonne! (a Thomas train track set - how did you know?).
We had consultations with radiation and neurology today and decided to
place an Ommaya port so that future spinal taps and diagnostic draws can be done without going through spinal taps.

Benefits of the Ommaya include:
   Avoiding regular sedation required by spinal taps
   Avoiding risk of leaky spinal taps (remember subdural complications last year)
   For the short term, allowing tests even when not administering intrathecal chemo
   Making diagnostics more accurate (no blood-contamination from traumatic taps)
   Enabling long-term surveillance (regular clinic visits)
   I'm tired right now ...don't remember the other reasons :)

The neurosurgeon talked about the difference between scalp and lumbar ommaya placement. The oncologists seem to prefer lumbar ommayas and the neurosurgeon says he will be putting the port under Jaymun's arm.

If Jaymun is doing better tomorrow we may go home until Thursday (when they plan to place the Ommaya). However, I am worried that his head seems to hurt a bit already, and I wonder if we have already received all the benefit we will from the chemo dose on Sunday and that we will lose progress by waiting until Thursday. We decided to review his clinical condition (observe him) tomorrow morning, and use that to help us decide.

Towards the end of the day (after very little napping and a restless night) Jaymun conked out for a few hours.
Later, half-awake, his head seemed to be bothering him again so we tried Tylenol and he fell asleep.
...hopefully tonight will be better.


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