Saturday, June 23, 2012

Still on ECMO, hanging out.

Another little update for y'all.  So, yesterday morning there was some concern that Bonnie's ECMO circuit (all the tubing and such) might need to be changed.  With any ECMO circuit, after awhile, clots start to form in the tubing and there's a risk that they'll eventually clot off the oxygenator.  The oxygenator is this cute little blue square that is *extremely important* in the whole ECMO process, and if it stops working, bad things happen.  Best to not let it clog up with platelets and such.

Changing a circuit is quite the operation.  In addition to the process itself, it tends to be another setback because the body's immune system has to react and get used to the new tubing.  The immune/inflammatory reaction is the reason Bonnie got so puffy when she was first started on ECMO (well, that and the massive amounts of extra fluid that were required to get it going).  It can also cause the lungs to "white out" on x-ray.  This has something to do with fluid in/around/on the lungs.  It's not a desirable scenario, but it's usually not too hard to fix (or it hasn't been for Bonnie, at least).

Anyway, Bonnie's doctor felt that the circuit was on the verge of needing to be changed but that it might last a couple more days if we needed it to.  Just as a little test, they did another quick clamp off trial to see how she'd do.  The theory was that if she did great on it, she might be able to come off ECMO before the circuit called it quits.  If not, it would be best to change the circuit in a controlled environment rather than wait for it to become an emergency.  You may have concluded that since I am not bouncing around declaring that we're off ECMO, that it was the latter scenario that played out.  Indeed.  When she was clamped off, her blood pressure took a dive (we've been battling her low BP since day one), and her oxygen levels went down.  Overall, though, the doc thought she did somewhat better on this trial than on her first one a few days ago.

So they changed her circuit late yesterday afternoon, which was completely uneventful.  When we went to visit last night, she looked comfortable, but a little puffy around the eyes.  Not nearly as bad as when she was first placed on ECMO, though.  Today, she looked slightly less puffy, and amazingly, her chest x-ray this morning still looked good (i.e. not whited out).  We're hoping that since her right lung still looks good, that she'll be able to make some good progress soon, despite the circuit change.

The current plan for our girl is to wean down her ventilator settings toward "rest" settings, then work on weaning her ECMO settings, *then* having a conversation about when she might come off this blessed piece of technology.  (My understanding of ventilators is hazy at best, and I'm not even going to try to get into what rest settings are, why they exist, or how she ended up on higher-than-rest settings in the first place.)

In other news:

  • The most recent echo showed some improvement in her pulmonary hypertension--please pray that it continues on its way down and out.
  • Bonnie's pneumonia seems to be clearing up nicely. Another answered prayer.
  • Her chest tube has started draining again.  Not entirely clear on why this is, but hey, at least she's got a chest tube to get rid of the fluid instead of having it build up again.
And some answers to a couple commonly asked questions:
  • Henry (who will turn 2 in two weeks! how did this happen?) has adjusted well to his new routine.  He's been having a blast for the past three weeks with my parents, and now Jonathan's parents are here to entertain him.  He does miss his teachers and friends from school, though.  Shout out to Susy, Cheryl, Audrey, and the love of his life--Hayli. :)
  • I'm taking care of myself, I promise.  Somehow sitting in a NICU for 8 hours a day patting on a soft baby head and watching vital signs on a monitor is really exhausting--so I sleep *really* well.  I'm also eating really well, courtesy of the hospital cafeteria, my mother, and amazing volunteers from Crossbridge who bring us meals twice a week.
Please keep praying for Bonnie, specifically her lung function and blood pressure issues.  Those are her problem areas at the moment that are keeping her from getting off ECMO.  We would *love* for her to be off in the next couple days, but only if she's ready, of course.  


  1. Still reading and hoping and praying for Bonnie and her loved ones. Oh, and soooo glad that you are sleeping, Leslie. :)
    Mama to Samuel, lcdh, Feb1/11

  2. So glad to hear that you are taking care of yourself. And glad that Henry is doing well too. Praying for our sweet Bonnie to continue to make progress. Sending my love to all of you.

  3. Hey guys... I am still praying for Bonnie and for mom, dad, and big brother... Praying that life works as life was made to work, and that an amazing strength pulses forward in all of you.

    matt and Toni daniels

  4. we are praying fervently!! I still am amazed that I was able to sleep each night. Such a great blessing from God. Praying for God's perfect timing for Bonnie to come off ECMO. May she continue to get stronger and stronger, each minute, each hour, each day.