Sunday, March 18, 2012

Long day

Coming into her Glenn we were expecting smooth sailing and heading home April 2nd. It might still happen but today didn't reinforce those dreams.   Her sats were sitting between 69 - 72 with 2 - 4 liters of oxygen most of today.   The looming unknown issue is the chylus that is leaking from her lymphatic system.   The drainage from her chest is light pink milk.   They are sure it is chyle because the sent it off to the lab.   They halted the fatty breastmilk and have started her on enfaport.   It is a yucky fat free formula.   At first she screamed when taking it,  but after her getting a lot hungrier she took it like a champ.   We still aren't up to her usual 4 ounces but 3 isn't too bad.   The idea is to replace the fats in her lymphatic system with nothing and then everything can repair itself.   Everything we have read are horror stories of dealing with this for weeks or months with chest tubes or even having a special surgery.   I am told by the attending that 9 out of 10 chylus babies shake it quickly and are out within a week,  week and a half,  the lucky 10% are around much longer.  

I like the odds but I also feel the guy was just saying that so we wouldn't start panicking.   On a brighter note Olivia is doing good tonight so far?   She is taking her oral pain meds very well,  Tylenol and oxycodon.   It really helps a lot better than all the iv pain meds.   She was very irritable and wouldn't let herself sleep today but she has finally given or up tonight.   She was laying there at 2am very calm and took her 3oz and meds great.   She then went to sleep.   Hopefully she'll sleep a long time.   Right now her sats are good with 2liters of oxygen,  77%.   Maybe she is turning a corner and will have a better night.  

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  1. Here's hoping the corner has been turned.

  2. I really hope she is able to shake the chylus and you all can be on your way home soon. Many prayers for all of you.


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