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Help the Cherubs: Aug 3, 2012

August 4, 2012

Not tons to report from Oliver Land today. His ventilator is down to 30-5-15-12 (Goal: 25-5-0-10). He is still gorgeously adorable. He spent most of the morning awake and smiling at everyone, and was pretty good about having a bath and being weighed this afternoon. I read him books til he fell asleep and I got to hold him up while Sam changed the sheet under him. That was pretty awesome!

His hemoglobin took a nose dive yesterday morning so they did a head ultrasound today to make sure there was no bleed, there wasn’t! His right tube may have started to slow down, we’ll find out on tomorrows X-ray. The left is still chugging right along. RT Carol told me today that they won’t rush to extubate him until the chyle starts to resolve because they don’t want to run in to problems and have to reintubate. So that darn chyle needs to take a hike ASAP. They started steroids yesterday along with the octreotide so hopefully it works! They’re also talking about starting to feed him the special chyle formula, possibly Sunday, because you can only be on TPN so long before you get liver damage. His is still just fine but there’s no point pushing it. However, food will aggravate the chyle. So it’s a matter of trying to find a balance that works.

Cherubs is trying to get more government funding for CDH research in the US. The bill has already been introduced on the floor of the senate but it needs support. If you have a minute maybe you could sign their petition? It only takes a second and you could help save other babies like Oliver. The letter states that 1600 babies are born with Congenital Diaphragmatic Hernia every year in the United States. 800 do not survive. The cause is unknown and little research is being funded. These babies deserve a chance to live. Sign Here

Xo

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Sleepy boy

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The drugs are still working I guess…

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Bath time

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New sheets!

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One Comment
  1. Mom of two permalink

    He is soooo precious! Keep on getting better Ollie!
    Ps. I’ve never heard of the CDH until I read your blog-totally signed the petition and will share it on FB too. Hopefully, more research will be funded to find ways to beat this evil disease.

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