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CPAP Trials: Aug 4, 2012

August 5, 2012

Oliver had a big exciting night last night. They put him on CPAP which means he is receiving pressure support but is initiating all his breaths on his own. He did pretty well for a few hours but then he got tired and fussy so he went back to his rate of 15 and got some drugs to calm him down. I can’t wait to do the 5 S’s on this guy (swaddle, shush, suck, swing, side)! Today he got down to 30-5-12-11 and they are giving him another go at CPAP tonight. CPAP is basically 30-5-0-11, we’ll see how he does. It’s good exercise for his lungs if nothing else.

The chyle on the right has indeed slowed down, but it’s picked up on the left side. Dr Chris explained to me that it could just be healing on the right but switching sides. Dr Raghad said they were going to talk to surgery about it today because it’s been a while on the octreotide and a few days on steroids and neither seems to be slowing it down. The longer its going and he’s on TPN the worse. Damage can occur to the liver after just two weeks and he’s going on five. So the PICU team would like to have it repaired. They’d have to stop the heparin and run a dye test to see if they could pinpoint the leak. Dr Himidan explained earlier in the week that she’d like to try to clamp the tubes to see if his body reabsorbs the chyle. The body wants to fill the space left over from all his organs, and with the tubes there is endless space to fill. But clamping it runs the risk of putting him in respiratory distress when the fluid fills him back up and compresses his lung. But surgery is also always risky. Discussions will ensue. Raghad assured me it would be Tuesday at the earliest because of the long weekend. I don’t have an opinion yet.

Some of his tapes came off today and we got to see his scar. It looks great, and will only get better as he gets older. He’s had a lovely day filled with cute shoes, soothing music and many many books. Dr Chris talked with me for a good long time today. We talked about how important it is to do normal baby stuff with him. Even though he can’t be held, he still needs to develop, so books and music and bugging him with shoes are all good things! Yay us! He also talked about the importance of really documenting this time. Not just Oliver, but all the details, especially in photographs. I think I’ve got that covered πŸ˜‰

He’s sleeping soundly right now, soothed with some bum pats, a little head rub and his Sleep Sheep playing the sounds of nature. Think good thoughts for his run on CPAP tonight, I’ll be praying hard! Xo

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He slept a lot today, tuckered out from CPAP?

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Elephant shoes!

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Healing!

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Holding hands with Daddy

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❀

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Bed time

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12 Comments
  1. Lani permalink

    He is so lovely Alex. Such a fighter! And I’m so glad I sent him some shoes since it’s good for him. πŸ™‚

  2. Mom of two permalink

    Praying for you that all will go well tonight!! Ollie’s hats and shoes are very cute and he is just adorable!

  3. Valerie permalink

    Is it ok that I actually want a pair of those elephant shoes?? So cute! Night Night Oliver!

  4. Angela permalink

    Hi Oliver,
    We are following your progress from here in Philly. We are so inspired by your perseverance!! Keep up the fight. Your buddy- Christopher
    P.S. I am SO ready to be done with all this vent stuff.

  5. Lyn permalink

    Oliver is a fashion trend setter with those adorable shoes and hats. I continue to pray for you all Here’s to more posts like this, filled with books,music and holding daddy’s hand.

  6. Go Oliver! Rock that CPAP! So glad he’s getting to have lots of normal baby experiences too. He’s such a sweetheart and gets cuter everyday. Continuing to pray for the chyle situation. Go away, chyle!

  7. Ashley g. permalink

    He looks so great! Chubby cheeks and little fingers! Stay strong guys! Praying you get this effing chyle situation fixed ASAP!

  8. jaymer permalink

    Keep bugging him with music! I love the shoes! Prayers & Hugs and lots of love from us Lunts xoxo

  9. sharon singer permalink

    You are a beautiful and strong family. Inspiring and a proper example of how greatful we should be for moments,stages, successes and health. Thank you for being so open during this time and sharing your story.

  10. louise boucher permalink

    So wonderful to see the progress. He is so sweet and bright eyed almost as if he’s saying I am going go be ok Mommy.
    . Keep up the good work Oliver you’re a true olympian!!!! Louise from Arnprior Ontario Canada.

  11. He is so adorable and I am glad that early next week you will have a decision on how to handle the chyle problem. I hope that soon we can see that adorable face and eyes in its full glory!
    http://ourcdhherolittlea.wordpress.com/

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