Wednesday, December 28, 2011

Trial Off of ECMO Tomorrow - Please Pray!

Jude had a reasonably good day today and has shown some improvement since his chest tube was inserted yesterday, so tomorrow he'll have a test to determine whether he's ready (or nearly ready) to come off ECMO.

At some point tomorrow during the day shift (7 am - 7 pm), Jude will have a trial run on very low ECMO settings, which will determine whether he's ready to come off bypass, and it may help in determining whether he needs any additional support (e.g. a steroid called dexamethasone, support from a high frequency ventilator) in order to come off successfully.

So here are some things that we are thankful for today:

  • Jude has seriously ratcheted up his urine output: He's been peeing in the neighborhood of 3-4 times the amount he was producing just two days ago. It feels a little strange to put urine at the top of the list of things we're thankful for, but it's a good sign! Urination means that his kidneys are doing their job. Moreover, since Jude is swollen with a lot of extra fluid in his body, urinating helps him dump some of the extra fluid that's hindering him from making progress.
  • Based on evaluation of two sets of test results, it's very likely that the fluid drained from Jude's chest is not chyle (i.e. lymphatic fluid). This is good news! If Jude had chylothorax, or chyle accumulation in the pleural space around his lungs, then that might signal an underlying problem with his lymphatic system, so we're very happy that doesn't appear to be the case.
  • Overall, Jude looked more comfortable today. Yesterday, Jude was grimacing quite a lot and appeared to be in pain. Discomfort and pain is not only extremely difficult for us to witness as parents, but it can also have some negative consequences with respect to his blood pressure and carbon dioxide levels, among other things. Although our little man still has a lot of problems that are likely painful, we're thankful that the medical staff were able to keep him a little more comfortable today.

Here are some things that we would love for you to pray with us about:

  • Jude has been on ECMO for a long time now, and it's very important that he comes off as soon as he can. He's now been on bypass for a little more than 3 weeks, and although there are babies who stay on ECMO longer than that, the risk of complications goes up the longer he stays connected to the machine. Please pray that tomorrow's "trial off," as it's called, will go as well as possible and that Jude might demonstrate that he can come off bypass without the use of a high frequency ventilator or other forms of support. Medically speaking, it might be a long shot for him to do well and come off ECMO without the use of dexamethasone, a high frequency ventilator, or some other form of increased support, but nothing is impossible for God, so we pray boldly for Jude to do well.
  • In order to be in the best condition possible when/if Jude comes off ECMO, he needs to shed quite a bit of weight and rid his body of excess fluid. For several reasons, he has had edema, which is swelling due to the accumulation of fluid in the body's spaces and tissues outside of his blood vessels. Earlier today, Jude weighed about 5 kilograms (approx 11 lbs), but ideally the medical staff would like to extract enough fluid from his body to bring him down to 4 kilograms (approx 8.8 lbs). As fluid is gradually removed from his blood by hemofiltration through the ECMO circuit, his body compensates for the fluid that is removed from his bloodstream by pulling fluid into the vessels from surrounding tissues. Please pray that Jude will continue to urinate regularly and that the medical staff are successful in extracting excess fluid in a way that doesn't compromise the amount of volume/fluid he has in his blood vessels or his electrolyte balance.
  • Jude is swollen not only because he has a lot of fluid on board, but also because he has inflammation, particularly in his abdomen. (His abdominal swelling has been so bad that his belly has been shiny because his skin is so stretched.) Jude's body has been through a lot of trauma between ECMO circuit changes, irritation from the presence of fluid in the peritoneal space of his abdomen, insertion of two tubes in his torso (one in his upper abdomen, one on the right side of his chest), and an infection that spread to his bloodstream (sepsis). His peritonitis (inflammation in the peritoneal space along the abdominal wall), in particular, has resulted in a lot of abdominal swelling, which can also be very painful. Please pray with us that Jude's inflammation and the pain it's causing will subside as much as possible.
  • Rose hasn't been feeling well over the last few days; consequently, she only saw Jude briefly yesterday, and she didn't come to the hospital at all today. She went to the doctor this morning, but whatever she has is viral, so there really isn't much that she can do to hasten her recovery beyond drinking lots of fluid and getting rest. She's planning on visiting the NICU tomorrow with a mask, and while we certainly will take any measures necessary to protect Jude and the other NICU babies from germs, it's no fun wearing a mask and not feeling 100%. Please pray that Rose can kick this illness quickly so she can freely visit Jude and touch him. She loves our little baby so much, and she yearns to nurture him, even if it can only consist of holding his hand or touching his head right now.
Beyond these specific requests, if you would, please continue to pray for Jude's overall healing as well as for wisdom for all the medical personnel overseeing and providing his care. Jude has been blessed with a team of competent, compassionate health care professionals, and we know that they are instrumental as God is ministering to Jude's needs.

As Rose said in a recent post, we are so very thankful to you all for your prayers, your words of encouragement, your notes and messages, and the other various ways in which you are supporting our family during this difficult time. Even though we may not have the occasion to respond to you all right now, we read all of your messages, and we're greatly encouraged, comforted, and humbled by your loving words and actions.

    Though I walk in the midst of trouble,
        you preserve my life;
    you stretch out your hand against the wrath of my enemies,
        and your right hand delivers me.
    The LORD will fulfill his purpose for me;
        your steadfast love, O LORD, endures forever.
        Do not forsake the work of your hands.
(Psalm 138:7-8)


  1. Brian and Rose, we haven't posted to let you know this, but we are following your blog and praying for you and Jude daily. We will continue to lift up these requests and pray for God's mercy and gentle hand on all of you today.

    Meg and Travis Hooper

  2. Glad for an update and specific things to pray for. Praying today that Jude will do well with the "trial off." Praying too for Rose to get better quickly! I know that must be so hard for her not to be able to be by Jude's side every second she can! Blessings, Dara Lynn

  3. Praising Him for good news re:the fluids coming out and testing negative for lymph. And relying on the Spirit himself to intercedes for us through wordless groans in accordance with the will of God as He listens to the plea of His people this day.