Yesterday was a hard day for the whole family and everyone who knew Evan. Over 200 friends and family comforted Brian and Sharon and Alex both at the funeral and afterwards at their home.
Brian and Sharon and Alex are now sitting shiva at thier home in Laguna Niguel until Sunday evening.
Anyone who would like to join the family please call Evan’s uncle Adam at (949) 697-6726.
The family is requesting donations to CHOC Foundation in lieu of flowers.
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Yesterday and Shiva for the family
10-10-08 – 8-2-10
Our Baby Evan died very peacefully at 9:20am today. The nurses called at 6:00 to let us know we should come in. Mom, Dad, Grandparents, Aunts and Uncles were all here holding and comforting Evan. He wasy very calm and slowly stopped breathing while in my arms. In the last hours Evan actually smiled a few times so we know he is at peace.
Not Good
We continue to take shifts at the hospital in an effort to “be there” with Evan. But in truth, we don’t really think that Evan knows we are here. No amount of talking, singing, rocking or rubbing has much of an effect on him. Perhaps putting in our time at the hospital allows us to grieve for the life we had hoped he would live.
Evan had some tests to determine his intolerability to feeds. The GI doc sent a scope down his GI tract to see if we were just missing the obvious. The results showed that the biggest problem was neurological in that Evan’s brain is not telling his body to move the nutrition from his stomach into the intestines and then out. This is called poor motility. Over time Evan’s stomach has started to shut down, as are his intestines, and the only way he can have a bowl movement is with the use of a sepository. The G-tube is now going unused as Evan can no longer tolerate any feeds. He receives nutrition via IV with TPN (mentioned in post below). There are all kinds of long term issues associated with this process though.
The baclofen pump is doing its job. Evan’s neurosurgeon believes that the dosing is at its peak, but modified the timing so that instead of a continuous drip the baclofen, the pump is programmed to deliver a dose six times a day (every four hours). Other pain meds are also being used to help with Evan’s discomfort, so much so that docs put him on a fetanyl (the synthetic form of morphine) and versed continuous drip. The combination of these drugs plus the baclofen really keep Evan calm, although he does have some daily rough patches.
Other than the obvious agitation/pain Evan has, he has also had some changes to his coloring, skin texture and respiration. His little body is getting tired and hope wearing thin.