Sunday, October 18, 2009

Fluid Rollercoaster or Waterslide?

This post has been updated at the bottom

There are three kinds of men. The one that learns by reading. The few who learn by observation. The rest of them have to pee on the electric fence for themselves. -- Will Rogers

Today I have felt like each of the men described in the quote above. In our last post we mentioned the desire to get more fluid out of Andrew and dry him out. We have read as much as we can put our hands on and know this is the right thing to do. After observing his lack of progress and eventual transition to renal failure, we became more convinced than ever that the only fluid we were moving was that in his blood. We started requesting that the fluid they were removing from his ECMO circuit (hemofiltering) and the diuretic drugs be stopped. After an entire night of asking and begging that they stop trying to dry him out, he looked horrible. His eyes were so sunken that the lids would not close on their own when he slept and we had to put in eye drops. His blood chemistry was also starting to look bad as were the numbers that tell you how his kidneys are doing. After a few more hours, I lost my ability to control myself. If you took the other issues off the table and looked only at his fluid levels, kidney failure is what most people would expect. At the beginning of the last trial off ECMO the attending stated we should be "looking at the patient and not the numbers". After an entire night of beating the fellow to death asking her to end this, that same attending had not been there to look at the patient. Needless to say, I said MANY mean things that I should not have... I should feel bad about this but it is how I felt and I was tired of being ignored. So, ten to twelve hours later, the team rounded and decided to stop the diuretics but continue the hemofiltering but at a lower rate. This was a good, albeit late, first step but at that point we would take what we could get.

A consult with the pediatric nephrologist was requested along with a renal echo to look for clots in the kidneys. The nephrologist on call was Dr. Wigfall. I can not begin to explain the relief I felt when I saw him enter the room. This is a man that is very active in the Medical School and I have had a little contact the with over the years. His attention to detail is exactly what we needed to solve our dehydration induced renal failure. His conclusion is that we were too aggressive with the hemofiltering and probably created a situation where the kidneys were not working because there was nothing for them to do with the current lack of vascular fluid. This was great news because shortly after this, hemofiltering from the ECMO machine was stopped and some fluid was given to replace the huge vascular loss. It took several hours for the changes in Andrew's appearance to return to their current almost "normal" state.

Andrew also developed some oozing from his ECMO cannulas. The team made several attempts to control the bleeding but ultimately had to call in the cardiothoracic surgery fellow to do some stitches. This seemed to work well, for the few minutes we were still there anyway.

The really GREAT news is that we are just getting home and Andrew is starting to pee again. Up to this point he has only put out 3 cc's of urine all day. When we left the hospital at a little after 11pm, he had produced almost 22 cc's. He is still relatively inactive and looks like he has no energy left at all but we are excited about the small amount of urine we see now.

The plan for tonight/ tomorrow is to start weaning him down on the ECMO flows. They are planning a VERY slow wean so I feel much better about this than any of the other trials. I have to wonder if it would not be better for him to be more stable...

The other news we have to report is that Harley (our roommate) passed away in her mothers arms this afternoon. As she was unable to get a heart for transplant, it does remind me of why I am an organ donor.

EDIT: Since I posted this, five hours has passed. In that time they did try to cut the flows from Andrew's ECMO which also lowered his urine output. They have returned to full flow again but his kidney chemistry numbers are looking worse. Nephrology has been consulted again. I am also excited about a new attending in the PCICU since all his renal issues started at the same time the last attending took over and started pulling fluid off.


  1. Hooray for the great news!
    Don't ever feel badly about standing up for necessary changes. Knowledge and "unexplanable instincts" mean the difference between life and death, whether it is medical, parenting, or LE (law enforcement). ALWAYS rely on instincts. "Medical" parents, too, necessarily confront "authority" occasionally. Parents "feel" when things are right and when they out-of-kilter. God gives instinct to "know". Tip from the "war zone"--if energy appears "too low"--Warrior Andrew has been through a lot--meditatively/prayerfully calm your inner self, then look as deeply as possible and as long as possible deep into his open eyes and radiate "life" and positive life energy. God will work through you. Babies normally have near-constant human touch and eye contact; "clinical setting" babies need it even more. So thrilled about Andrew's pee progress. With all warrior Andrew has gone through and succeeded, the slow weaning sounds perfect.
    So very sorry to hear about Harley's passing. Andrew may be feeling everyone's feelings and may need reassurance, too.
    You guys take great photos!
    Love, Elizabeth and Larry

  2. Yes, I second that - don't ever feel badly for voicing your opinion. Even if that voice has to get louder than you'd like, it needs to be heard when you feel that strongly about something. Kudos to you for standing up for Andrew! I'm so glad to hear he's making good progress again. Many prayers for a good day today!!

  3. Praise God for pee!! And thank God you were able to go home and possibly get some rest(in between pumping).God knows our hearts - there is a time to be angry and this was it. We continue to pray for all of you today and for the medical team too. I do feel another miracle on the way. Hang tight and expectantly!! Prayers continue without ceasing. Also, we are remembering Harley's parents during this most difficult time. Sending lots of love and prayers, Mom & Tom
    Love, Mom & Tom

  4. Becky, way to go for taking a stand for Andrew until you were REALLY heard! Such great news to hear that Andrew is making progress. We continue to pray for all of you knowing that God will always meet you at your point of need. We also pray for Harley's family during these days.

    Our Love & Prayers, Alan & Jeri

  5. Becky, I wouldn't have expected anything less from you! It is a parent's right to fight for their child and you did just that and was heard. I'm glad to hear Andrew is holding his own. The prayers are flowng.
    My most sincere condolences to Harley's famiy.

  6. You guys are the PERFECT parents for Andrew. Your medical knowledge combined with your parental instincts is the perfect combination. I'm so proud of you for standing up for him! His poor little kidneys have been through a lot. I will be praying the right people will be in place to do what's best for Andrew. I also said a special prayer for Harley's family.

    Love you guys!

  7. Good Morning:

    A short note of encouragement as you all have have been on quite a ride. Your point that the med folks need to look and I do mean look at the patient is right on.
    I have been a nurse for many years and whenever you do not take the patients family's concerns and their instincts into consideration, you can
    lose valuable time. That being said my hope is that Monday is a day for improvement and optomisim.

    You all remain in our thoughts and Andrew you are so loved. A good day to you sweet boy!!

  8. "Luck" is often relative and certainly overused, but I'd say that Andrew is lucky to have you both as parents. I don't know Elizabeth and Larry but I'd echo what they said. Thinking of you both.
    Eric Hexdall

  9. I am keeping you guys in my thoughts and prayers!

  10. How incredibly glad your voice was finally heard & that you now have the help of the peds nephrologist. We're praying for Andrew's kidneys to improve & hope that he feels better with the latest adjustments. We're sad to hear about little Harley...praying for her family.

  11. Becky - So glad the doctors finally listened to you! Andrew is amazing as he continues to fight. I tell everyone about him. Your family is always in my prayers. My condolences to Harley's family. Love, Lisa

  12. Sometimes you know what's best and you have to keep sounding off until you find someone who will listen. We LOVE Dr. Wigfall - he is Carter's Nephrologist and has been following him for the clots he has. Andrew is certain in great hands with him.

    I am praying (although it sounds a lot like begging) that timing is worked out so that Andrew's ready to come off ECMO. If you don't agree with what they are doing, find a Doctor (or better yet, a Nurse who's not afraid to voice his/her opinion like Shanda) who will listen.

    As always, let us know if you need anything or just need to vent.

  13. You did the right thing! I was rather voicestrus sp? with Kasey as well, but I am his mom and knew what he wanted/needed and what I needed as his mom. It is hard to get your voice across sometimes, but remember you are Andrews only advocate. I hope he continues to pee pee pee!!!!!

  14. So glad that you were able to utilize your medical background and parenting instincts to help Andrew. Continue praying for your little boy...

    much love,

  15. I often felt like I could not voice myself at the NICU.. and I most often did not. I am so glad you were able to to help your son!!

    praying for you and your family!

  16. I am so glad that they finally seem to be on the same page as you all! It seems to be working too, maybe they will actually listen to y'all a little more. I am sad to hear about Harley. My condolences for her family. I continue to pray for your family. Good job Andrew!

  17. There is nothing wrong with being an advocate for your child (even if you have to raise your voice about it!)-Andrew is very fortunate to have parents who understand the intricacies of fluid balance! I pray that he had a better today, and can rest and recover a bit before his next trial off ECMO. You are in our constant thoughts and prayers.


  18. Psalm 46:1 "God is our refuge and strength, an ever-present help in times of trouble." When you feel the most alone, trust that God is there with you.

    You all are in our thoughts each and every day, each and every hour. We cannot feel your pain, or begin to imagine what you are going through -just know we care and will continue our prayer vigil for your precious Andrew. He is God's creation and he is beautiful.

    God's peace and love to you all,
    Tim, Donna, Alex and Lawren

  19. Don't feel bad about voicing your opinion. You are speaking for your little guy. I voiced my opinion alot in the NICU and asked so many questions. You have to. This is your baby. I am praying for your little warrior. I am also praying for you and Gene to remain healthy and strong.

  20. Hey there!! First,I agree with ALL! Even a couple loving nurses told me..."we shift change, you don' see his norm and need to tell us if he needs something". I always appreciated that. Second...isn't it funny when a little pee is a celebration?? We were always so excited about Lasix, because we felt like we were meeting Max for the first time again. Take heart, good stuff is around the corner.


  21. Keeping y'all in our thoughts and prayers! We are here if you need anything!

  22. Becky, Gene and Andrew - you are in our thoughts and prayers! Becky - keep up the "mama bear" routine and hang in there Andrew!! Love, Chellie & Bob