Tuesday, January 18, 2011

Tuesday Morning

OK, you probably don't believe me by now, but sometime soon he will have that surgery! He was looking so ready for it and it seemed it would go on as planned. We spoke to the fellow and he said we were waiting for the surgeon to arrive within the next half hour to get her opinion. Wouldn't you know, he started shunting again and so his numbers didn't look as good when she walked in; I guess he really didn't want surgery yet! For those of you that actually know what you're talking about medically, bear with my description here...I think, during shunting that the blood essentially flows in the wrong direction which affects blood pressure. This is easily manageable so it's nothing to worry about really, they just didn't want to do the surgery while the issue was occurring.

The great news is that his oxygen levels are good. For a CDH baby, these levels/his lung functioning is looking pretty good right now.

As you know, there were issues the last couple days with Ramsey being overexcited and trying to breathe on his own. Right now, we don't want him to breathe on his own, we want the machine to do that for him. Each time that occured, he was sedated a little. Last night it reached a point where they couldn't really give him more sedatives. They did an X-Ray and compared it to a previous one. His breathing tube seemed to be inserted a bit more so they pulled it out a bit, and he stopped trying to breathe on his own. I think it has been fine since. Since his pxygen levels are good, they might try to switch him to the conventional vent today. They else want to do an ecko (sp?) to look at the fluid inside and to check his heart. Evidently, the surgeon today likes to do that before she operates.

It was very exciting to see the X-Ray because we could actually see the current size of his Right lung. I could not believe how big it was! If it really was just a sliver at birth then he has come a long way already!! I intend to ask if I can see the first X-Ray so I can see this for myself. I don't know if that type of expansion is normal or if we have a little miracle on our hands. One thing I forgot to ask, let's also pray that during surgery, at least some portion of his Left lung will be discovered. How awesome it would be if there is something there that can also grow.

All in all, I think everyone at Children's is happy with his progress.


  1. Every bit of news is encouraging. May God and his guardian angel continue to watch over Ramsey.

  2. have just came across your blog, good luck in Ramsey's journey, he sounds like an amazing little fighter already xx
    it's been a year for us since our CDH miracle came home, our NICU journey seems so long ago now, but yet i can remember everything like yesterday xx

    mummy to our sunshine warrior Lewis
    LCDH survivor 12/11/09

  3. Hi Lisa,

    A similar thing happened with Jaxson in his first 24 hours - they were considering putting him on ECMO, but one of the Fellows decided to pull the chest tube up a little bit and then also put him on Nitric Oxide (I think that what it was, but it's been a while). Those two adjustments saved him from having to go on ECMO.

    Jax had his surgery on day of life 5 (also my birthday) and the Xray after the repair was very eye opening. We could see his right lung and it was pretty big and the there was a tiny sliver of a left lung and the rest was fluid. At his 2 year visit to CHOP, they took another Xray and both of his lungs were normal size! It was pretty amazing to us that his left lung grew so much in 2 years!

    Anyway, Ramsey will let the surgeons know when he's ready. It sounds like he's already doing that! A true fighter!


  4. Still waiting and praying...

  5. Its amazing to me how much support is now available for families of CDH children. Your family is VERY blessed. I had my first undiagnosed CDH baby 9 yrs ago. He died at 25 days of age. My 2nd undiagnosed CDH son is now 7 and autistic. We had NO help or support with our sons. I pray that your Ramsey is stong and is home with his loving family soon! Sending prayers for your family from Wisconsin.