It is great to have Oskar with us at home, even though it is difficult. He continues to have many seizures every day & night, however having bought a video monitor & our hospital supplying a Sats Machine, we can sleep a little more comfortably in the knowledge we will be alerted if Oskar is in distress.
Getting him home has also made us more aware how cruel his illness is. While in hospital, you are secure in the fact that medical staff are on hand at all times to deal with any problems, at home it is down to us . We do get great back up support with community nurses visiting, and we get help from our local hospice, who provide excellent qualified nursing staff several days a week to look after Oskar.
Oskar continues to have more bad days than good. We are hoping his drug change will have a positive effect (off Phenytoin on Zonisamide) He still needs rescue meds most days, as seizures tend too make him really unsettled & when he starts to cry, it is nearly impossible to settle him. Has had his central line removed & is lined up for a mickey button in July. Will update any news.
From November 2006, Oskars battle became harder for him to fight. He was constantly sick and unable to keep any food down. I am sad to report that in February 2007, Oskar lost his fight for life and fell asleep peacefully.
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