Tuesday, June 19, 2012

Another day o' crazy.

There were a few interesting developments today.  First, Bonnie's chest tube continues to drain.  They think it's a chylothorax, which means the fluid is lymph fluid.  The doc is glad they decided to drain it, although putting in the chest tube, and now the chest tube itself, did cause a couple issues.  The whole deal probably set Bonnie back by a few days, but it's something that would have needed to be taken care of eventually anyway, and the sooner the better.  So there's that.

Around noon today they did another echo to check on her pulmonary hypertension.  This was the low point of the day, because the echo showed that it was pretty severe, and worse than it's been on previous echos.  They had started two medications after yesterday's echo to address the pulmonary hypertension.  One of them--nitric oxide--should have helped fairly quickly (it didn't), and the other--sildenafil--is more of a long term thing that may not help for awhile.  Pulmonary hypertension is really scary, because it can be really hard to treat, and it can be the thing that keeps babies from coming off ECMO.  The fact that it was worse today than yesterday wasn't a good sign.

Despite the above, there may be some good news.  When they put in Bonnie's chest tube yesterday, the doctor also decided to put in a new endotracheal tube. Using the new tube, today they cultured some fluid from her lungs to see if there could be any infection there.  (The previous tube, which had been in for over a week, would have grown bacteria no matter what, just because it had been in for so long.  With a new one, they can trust the results of a culture.) So far, it looks like it's growing some sort of gram negative bacteria.  I can't remember enough from my microbiology class to explain what that is, other than to say, you don't want gram negative bacteria to be growing in your lungs.  Bottom line is that it looks like she has pneumonia.  Which sounds like bad news, and it kind of is.  However.  Pneumonia should be treatable, and they're starting her on antibiotics today.  *Also*, a lung infection could explain why her pulmonary hypertension is so bad.  Our hope and prayer is that it's the pneumonia that's making her pulmonary hypertension look so bad, and that once her pneumonia clears up, the pulmonary hypertension will improve as well.  

If that whole explanation made your head spin, I'm with you.  Overall, though, we left the hospital this afternoon with some hope that things may start to improve in the next few days.  Right now my main prayer request would be for Bonnie's pulmonary hypertension to go away, or at least improve significantly.  Also please pray, of course, that her pneumonia will be easily treatable and won't cause further complications.  Thanks, y'all.


  1. Leslie - Been following every update and keep thinking of you all daily. Praying for you on this journey knowing He's good and will meet your needs in ways we don't even know how to articulate. Thanks for the details of this blog. I have been blessed so much by your courage and faith and sweet Bonnie. I hope one day soon to be able to meet her. She's a real fighter...

  2. Here's hoping that treating that pneumonia will start to turn the pulmonary hypertension around. Thoughts and prayers!
    -Leslie H

  3. Up down up down rollercoaster of yuck. Lots of prayers that the next few days give both good news and big improvements!

  4. Awwww, man!!! Pneumonia?! Yuck!!! Clara had a chylothorax too... and it resolved pretty quickly. Glad they decided to go ahead and do a chest tube. Praying that in the days ahead her sweet little body will heal and she will grow stronger. And pulmonary hypertension - get out of here. No one even likes you.

    Remember this is a marathon, not a sprint. Slow and steady....

    Love you!

  5. Thinking of you and sending up prayers for your little Bonnie. I like the theory of the pneumonia causing and increase in the hypertension because that means something CAN be done about it. Thank heavens for modern medications! Hopefully, you will see a quick turn around once the antibiotics kick in.

    Lots of love and prayers!
    Jacob's Mommy-RCDH Survivor

  6. Praying for your daughter's pulmonary hypertension to improve drastically over the next few days. Bonnie is a beautiful name...and a beautiful girl. Stay strong, Helms family.

  7. Leslie, Samuel got his first round of pneumonia (Ventilator-Assisted Pneumonia, VAP, so common in these intubated babes) when he was 18 days old. It could totally be causing the change in pulmonary hypertension. They started abx and there was an instant turnaround in how he was doing. He had repair surgery at 25 days old.

    I am praying this is the case for Bonnie also, that the abx will make her feel soooo much better. I know where you are at and the ups and downs are just exhausting and emotionally depleting. Sending you CDH mama strength.

    Mama to Samuel, lcdh, Feb1/11