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Never a Quiet Moment: July 29, 2012

July 30, 2012

Poor Tim had to sit through the really rough part today. When I came in this morning his vent was set at 30-5-35-13. That’s getting closer to our goal. Dr Hady was talking about extubation in maybe 3 days. Things were looking good for Oliver’s lungs. But when we switched things took a turn. His co2 started going up and as Tim watched his settings crept up to 40-5-50-15. That is a terribly difficult thing to endure as a parent. You sit here, you can see your child is in distress, and there is absolutely nothing you can do to help them. You just have to watch. And hope that someone who knows more than you do can do something about it. If only this could be solved with cuddles and hugs.

This morning I was freaking out about chylothorax because I googled it (note to self: Dr Google is not your friend). By this evening we were back to panicking about his lungs. Dr Hady sent for an X-ray and found that the chyle was building back up in his chest. With nurse Marci at his side they managed to unclog his drainage tube and get 60 mls out of him. Now he is doing better and they are going to try to wean his settings back down overnight. He’s at 35-5-50-15 right now. Our goal is 25-5-0-10. Keep praying, especially that the fluid was the entire problem and he will be extubated successfully this week!

A big part of today involved debate around medications to treat his clots and his chyle. It sounds like everything is just always difficult to balance and there is a lot of highly sophisticated trial and error. They had hoped that draining the chyle would be enough, but it hasn’t slowed down. Yesterday he drained 600 mls. That’s like a grown man losing 20 liters in a day. It’s made up of good stuff like protein, fat and white blood cells. They replace half of what he loses but it’s still a lot. So now he is on a medicine that helps stop it in 15-20% of cases. Let’s hope his is one of them! There was also debate about how to administer his heparin (blood thinner). The thrombosis team would like him on a longer acting version of it, but if it needs to be stopped because of a bleed, surgery, etc, it takes 12 hours. So PICU convinced them to put him on continuous heparin & at3 which helps make the heparin work better. I have very little idea what any of this means. Hopefully his blood clots go away, he doesn’t have a brain bleed and he won’t need surgery to fix the chylothorax. That is definitely everyone’s goal and so far I’ve seen everybody here work pretty darn hard to accomplish their goals.

Praying for a quiet night and a quiet Monday tomorrow! Xo

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Happily bundled this morning

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New photos to admire

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After his beauty treatments

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8 Comments
  1. Poor baby, I hope they figure out a way to fix the chyle soon! Sending more prayers your way.

    I don’t know if this is even an option for Oliver, but another little girl I follow is in the hospital right now following heart surgery and also had a chylothorax complication (or something similar). In her case a pleurodesis procedure stopped it. http://cassandalex.blogspot.com

  2. Mom of two permalink

    He is such a sweet little baby Alex. I continue to pray that he gets stronger and better every day so you can take him home and never let go of him (although he might mind that when he is a teenager :))! Stay strong and positive! Lots of positive vibes sent your way from a fellow mom who is glued to your blog!
    Jo

  3. Jaime permalink

    I’m Tim’s teammate from bjj and I’ve been following your blog. My husband and I are praying for Oliver. he’s a fighter!!!

  4. Aah the ups and downs. I now know why I hate roller coasters. I do hope little Ollie kicks this chyle out soon. Hang in there.

  5. Marco permalink

    Poor poor little thing. I like that you put the photos, thats a great idea.. it would comfort me that at least he can look at them and know that his parents are near by no matter what…

  6. Lana Fisher permalink

    Dear Alex
    I just heard about your baby boy, having been through 4 months on NICU at Mount Sinai with my daughter (who was born at 27 weeks) I know very well the emotional roller coaster you are going through. All I can say is that everyday’s new challenges eventually get smaller, but it is a tough road while you are there. When you are in NICU it feels like you are never getting out, but just know you will and be able to bring your beautiful baby boy home. Patience is a hardest thing, especially when progress is slow. My thoughts and prayers are with you and Tim>. If there is anything you need or if I can help in any way just e-mail me directly.

  7. Gloria permalink

    Hi just read your last blog entry. I had a similar experience 33 years ago . Life altering for my husband and my self , we were very much alone . Happy to say we just made a wedding for our son . It’s a long haul , sounds like you are doing all the right things. One of us was at the hospital at all times. I always felt he knew we were there. these kids are tough .
    We spent 3 months at sick kids , it took a few tries before they extubated him. Once your son is stable, there are many more adventures to come. At the time I never thought I would get through it , now it seems like a bad dream. Good luck I hope things settle down . Any questions I am happy to answer. Gloria

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