Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)


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Saturday, July 24, 2010

ECMO Treatment

Hello all, this is Thomas writing again. Alicia likes it when I right.

The nurses say that Whitney has been pretty stable on ECMO since she's been put on it. The charts say that the exact time she started ECMO was Thursday 7/22 @ 1:13pm so that means she has been on that life saving machine for over 57 hours now. We had received a call from the surgeon saying that she seems pretty optimistic that Whitney may be ready for the corrective surgery by sometime mid next week if she continues to be stable on ECMO, but of course things could easily go wrong in a moment with ECMO, so we're still needing all the prayers we can get to ensure the machines don't fail, that the blood doesn't clot, and that Whitney herself can be strong enough to tolerate the current treatment.

The future seems a bit ominous. In the X-Rays, they can only see the left lung. They can't see any of right lung, not even a little bit. The doctor tells us that its not like she has a good lung and a bad lung, but rather more like she has a bad lung and a worse lung. This is not good, but the doctor's haven't completely given up hope yet. They even told us right up front that if they felt that putting Whitney on ECMO was 100% futile, then they wouldn't give us that option to begin with. So what I take back from that is that there still is a chance, and Alicia and I are looking toward that glimmer of light in these dark times.

The nurses change Whitney's position every 4 hours to reduce swelling. This is nice that they have to change her position so often because then we get to come back at least that often and enjoy looking at her doing a new pose. She's our little super star and Alicia and I are the paparazzi, just taking a snapshot of her at every opportunity.

Both Alicia and I have now had the opportunity to change Whitney's diaper once. Alicia hasn't seen Whitney's eyes open yet, but I've seen them twice so far, once when Whitney was just born she opened her eyes, and then again when the nurse checked her eyes and I was there alone. There's no way to tell her eye color yet, but it's probably going to be brown, just because.

Alicia and I are very much aware of all the prayers and support that so many people are expressing and giving and we can't thank everyone enough.

3 comments:

  1. I remember the first xrays I saw of Quinn's chest after she was born. They were just as you described Whitney's. Her left lung was good, and fully developed, but they suspected that her right lung was a very small bud, at best. After a few days, the right lung started to show, and began to push the liver down back into her abdomen. She's working with what appears to be almost half of her right lung these days. There is TONS of hope for your girl. We aren't done with this journey by a long shot either, but she could have something to work with there, keep the faith. I know how scary it is to see NOTHING of a lung though, so I can understand what you're feeling right now.

    Prayers.

    Katie (Quinn's mom)

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  2. Welcome to the world Whitney and Congratulations Thomas & Alicia!! Whitney is beautiful! Hope ECMO is giving her lungs and heart time to heal and get stronger for surgery. My son is also an ECMO survivor and I know how scary this time is. Cherish every moment with her and take lots of pictures. Praying for strength and stable days for Whitney.

    Hugs,
    Tracy Meats, Ian's mom from CHERUBS

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  3. Thank you, Thomas, for being so faithful in keeping us updated. Your little family is on my mind continually throughout the day. I see so much of each of you in Whitney! Who she looks like depends on who's next to her! :-) Either way, she is SO BEAUTIFUL! Tell Alisha I LOVE the Flamin' Rockstar Hair Style and I love the way Whitney rocks the purple bow! Cuddling mommy's bear has to feel good to her. Love you guys.

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