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A DAY IN THE LIFE OF SPENCE J. VITALIANO!
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12 NOVEMBER 2008
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Nov 12, 2008 08:01pm (EST)
Well 6 am and the Respiratory Tech informed us the testing was complete. Unofficially he said Spence may benefit from BIPAP rather than CPAP. He said Spence is having Central Apnea spells at night, he was able to get his sats to 100% by increasing his O2 to 1/2 liter of flow through the night. He told us to wait for the doctor to contact us and he expected that the doctor would want another sleep study to determine additional information. So now we're researching something new - seems like a constant thing with Spence. By the time he's a teenager I mine as well have went to med school - LOL!!
He had a uneventful day and isn't as sleepy today as he has been which is positive. The nurse practitioner from the neurology clinic talked to me about Spence's status the other night and about his seizure last week. She's concerned that if he stays sleepy until this weekend (which he isn't now) or if he has more seizures they may need to use another seizure medication. I asked her more about the EEG and how bad it really was and she said he was seizing up on every frame of the EEG test which was a 20 minute test. She said according to the EEG their was no way he could have been developing effectively since his brain was seizing so much. We've seen a significant improvement in his development, head control, trunk control, & attention span since they started him on the medication so I'm very hopeful for him.
Only time will tell - Spence is clearly getting the best possible care any parent could ask for. Thank God we're near CHOP.
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Posted by Spence | Comments: (1) | Permalink
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10 NOVEMBER 2008
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Nov 10, 2008 07:50pm (EST)
Spence's Endocrinologist called me tonight and says the results of the CRH test say he's fine and that he's producing the hormone properly which is really good because that would create more long term problems otherwise.
Also I haven't really mentioned it but we've been slowly weening Spence off his Reglan and he's now down from 4 doses (QID) to once per day and doing great so far.
Today we got an appointment date for the Feeding Clinic at CHOP as well which will help us determine a plan to start his oral feeds. I'm sure they'll want to schedule a swallow study.
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Posted by Spence | Comments: (0) | Permalink
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7 NOVEMBER 2008
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Nov 07, 2008 07:46pm (EST)
Today Spence had his CRH Test and Raquel was accompanied out there by our newest nurse Teresa - she's been great so far. Things went fairly uneventful although the nurse had a challenge getting the IV started on Spence. Funny that Teresa asked if we had considered a port - I have many times but I've been told it's too much of a risk for infection.
With him only needing lab draws every two months it's not as bad as before, he does seem to be getting better too. He was much harder to stick before.
We should get the results in a week or so from his Endocrinologist.
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Posted by Spence | Comments: (0) | Permalink
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