Monday, June 18, 2012

Plan B.

Not gonna lie--today was emotionally exhausting.  By mid-morning, the big plan (with the three tests) had totally gone off the rails.  Around 2:00 a.m., Bonnie started having issues *again* with low blood pressure.  They had to turn up her ECMO flow to help, so the low flow trial didn't happen.

We got to the hospital around 9:30 and spoke with the neonatologist about formulating a new plan.  She said that she felt like Bonnie's blood pressure issues were more related to something the medical team was doing versus something that's wrong with maybe they were pulling off too much fluid, for example.  By that point in the day, her blood pressure seemed pretty stable, so she wanted to do an echo with the ECMO clamped off completely (this was #3 of the three tests, even though she hadn't passed the first two).  This was so they could get a good look at her heart function, as well as assess for pulmonary hypertension.  The verdict was that her heart is functioning well, but that she does have a good bit of pulmonary hypertension (the blood pressure in her lungs--if it's too high, it makes her heart work too hard to pump blood through the lungs. It ain't good.).  Also, literally five minutes into the trial off ECMO, they got a blood gas and her CO2 level was already up to 72.  They're trying to keep it between 45 and 55, which is where it was just before they turned off the it had gone up really quickly.  Fortunately, it was easy to resume her ECMO flow, and that corrected the CO2 issue.

It was discouraging that she flunked her trial off ECMO so quickly.  The neo said that usually, when babies fail a trial off ECMO, it's because they can't keep their oxygen level up.  Bonnie actually did really well with that side of things.  Her problem is that she wasn't able to get rid of CO2 fast enough.  I either didn't get or didn't understand the explanation for why this might be the case.  Either way, our girl wasn't ready to come off ECMO today.

The neonatologist did decide to start Bonnie on some nitric oxide (iNO), which is a gas that she's receiving through her ventilator.  Its job is to help open up the blood vessels in her lungs to help with the pulmonary hypertension.  She also started her on sildenafil, which is...Viagra!  Another medication that can help with pulmonary hypertension.

The other thing we learned from Bonnie's echo today was that she still has an "impressive" pleural effusion.  Can't remember if I mentioned this before, but she's had it at least since this past Friday.  The oversimplified explanation is that it's an accumulation of fluid around her lung.  Anyway, there's been this battle of sorts between the folks doing the echo's (which is a type of ultrasound) and the neonatologists reading the daily chest x-rays.  Apparently, the pleural effusion is really hard to see on x-ray, so the neos have been fairly unconcerned about it didn't seem to be causing any problems with her right lung.  However, on echo, it looked really big (still), so Bonnie's neonatologist ordered a chest ultrasound to specifically look at the pleural effusion.  Bottom line is that on this test, it looked "big enough to do something about it."

So, what do you do to fix a pleural effusion?  You drain the fluid!  And how do you drain the fluid?  You put in a chest tube!  I was really really hoping it wouldn't come to that, because everything I've ever heard about chest tubes indicates that they're really painful.  They ended up putting in some special variety that uses a smaller tube and doesn't require an incision to "install."  In theory it should be less painful than a traditional chest tube.  Anyway, as soon as it was placed, it drained over an ounce of fluid.  That might not sound like much, but when you only weigh 7 pounds and your lungs are already squished, an ounce of fluid mashing on them could be significant.  They're also running some tests on the fluid that drained to make sure there's no infection, among other things.

So that was our day.  I think we actually blew by plan "B" long ago and are now on something like plan "Q". I don't even really know what the plan *is* at this point, other than I think they're going to do another echo tomorrow to see if the nitric oxide and Viagra (hehe) have helped the pulmonary hypertension.

As far as prayer requests, I have a few:

  • For wisdom for Bonnie's doctors, nurses, respiratory therapists, and anyone else involved in her care. She's making a lot of the docs scratch their heads trying to figure out what her body is up to and what they need to do to fix it.
  • That the chest tube won't be painful for her and that having all that fluid drained will be helpful for her. 
  • That the echo tomorrow will show some improvement in her pulmonary hypertension.
  • That her blood pressure would stay where it needs to.  This low BP business is troubling. (To me--the docs seem more perplexed than worried.)
  • That the next trial off ECMO won't happen until she's ready to pass it.  I would rather wait a week to try again (it won't actually be that long, God willing) and have her pass it, than try in two days and have her fail again.
I know I keep saying this, but I really mean it--thank you all *so* much for your prayers, positive thoughts, and words of encouragement.  Thank you for the love that you've shown our family. We are so blessed.


  1. Sending love and thoughts your way. Was looking for news so I came over here. You are so strong and Bonnie is your daughter, so I'm guessing she's got some of your strength! Hang in there.

  2. Will continue to pray hard for Miss Bonnie, her family, and the medical team.

  3. The phrase "emotionally exhausting" doesn't begin to cover days like you had today. Whew. I'm tired just hearing about it and reliving it with you. A chest tube can make a BIG difference. And Clara's never seemed to bother her. In comparison to cannulae in the jugular, it probably feels like nothin'. (Plus, they're so conked out, I don't think they can tell...) Continuing to pray for you all and for the specifics you mention here. Also praying that you are getting some rest and recovering yourself and that you have the emotional energy to face whatever tomorrow may bring you. We believe in Bonnie! Come on, girl!! Show us what you got!

  4. I have been thinking about you and Bonnie all day. Will continue to pray. All these ups and downs must be so hard. As a parent you want things to just get better every day with no set backs. As a parent you want to hear that the doctors have the issues all figured out and can just make everything better. I wish it could be that simple for Bonnie. I wish you didn't have to go through all these ups and downs. have a faithful God to hold your hand and support you. I pray that you you feel His presence and all the love and prayers coming your way. Bonnie is so loved!!! I pray you will be able to rest tonight.

  5. I just want you to know I am a faithful prayer warrior for your beautiful Bonnie. My little girl comes in my room every morning and one of her first questions..."How is baby Bonnie today"? I can't imagine the daily roller coaster that you are on, but your sweet baby girl is already changing lives!! Soaking you and your beautiful family in prayer. Thank you for sharing your journey with us. I work with Sarah and we talk about Bonnie and think of her all day at work. She is such a proud grandmother!!! GO BONNIE GO!!! Love, Jon, Julie, Jaden, and Mary Ella Moore

  6. I'm praying that Baby Bee shows she has lots of "sting" in her! You are all in my prayers.

  7. Praying for Bonnie!!! She will do it when she is ready! These babies have their own time schedule! It sounds like they took some steps that could really help her!
    Mom to Dakota 12-25-2008
    RCDH/ECMO survivor

  8. I am a friend of Lisa (Maddie's mom) and have been following your story. Just wanted you to know that I am lifting Bonnie up in prayer and will continue to pray for her!