Saturday, December 31, 2011

Year's End

Today, while I assume that the rest of world watched college football, prepared for New Year's Eve festivities, or otherwise wrapped up 2011, Jude was partying in the NICU, celebrating his decannulation from ECMO last night. :)

This morning when Rose and I arrived at the hospital, Jude was wide awake and looking around. Apparently, he had been that way since his nurse for the day shift had arrived around 7 am. As the morning wore on, Jude continued to be alert, and he was moving around a little bit more than usual. The medical staff have given him Ativan several times in the last day or two to help him chill out when needed, and his morphine and Versed (used as a sedative) have been increased a little bit in accordance with his weight change, I think. And yet, despite having been increasingly doped up on such meds, the little man was still awake throughout the morning. This crazy kid doesn't want to sleep, just like his sister! Eventually, this afternoon the right amount of drugs was administered to help him rest, and he snoozed for a while.

The big news today is that the medical staff continued to successfully ventilate Jude with an oscillatory ventilator: He seemed comfortable, his blood gases were awesome, and his chest x-ray may have been the best one that we've seen. The oscillator, as his current ventilator is called, maintains a higher baseline pressure, which keeps Jude's lungs and the alveoli (air sacs in the lungs) open more consistently than a conventional ventilator. While the lungs are open, the oscillator delivers very small rapid breaths, which are almost akin to vibrations (as opposed to the more forceful breaths provided by the conventional vent). It can be a little distressing to see a baby like Jude on a high frequency ventilator like the oscillator -- his entire torso vibrates in accordance with the approximately 600 mini-breaths that he's getting per minute -- but it's scratching him right where he's been itching. At this juncture, this kind of ventilator can support Jude more adequately without risking injury to his lungs. As Jude progresses in the coming days, the hope is to slowly wean him off of the oscillator, i.e. turn down its settings, and then eventually move Jude back to a conventional vent.

As yet, Jude's surgical repair hasn't been scheduled, so we don't have a definitive date or time for when that will happen. At the moment, Jude's doctor wants to keep him stable on the oscillator and begin to conservatively wean him. To wean him too vigorously could cause his lungs to collapse, but his doctor doesn't want to wean him too slowly either, as that would merely prolong the interim period before surgery and possibly increase risk of ventilator-induced lung injury. Once Jude can tolerate settings on the oscillator that are a little bit lower, then his doctor can consider moving him to a conventional vent. Jude's surgeon prefers that he be on the conventional vent when he performs his surgery, as there are surgical advantages to being on that one instead of the oscillator. Moreover, if Jude is on the conventional vent for surgery, then he would have latitude to move back up to the oscillator for additional support after surgery if that's needed.

Jude continued to have sufficient urine output today. This confirms that his kidneys are still working, and it should allow him to relieve himself of some excess fluid through diuresis. He didn't need any Lasix today -- he was urinating on his own, which is exactly what we want to see.

In other news, Rose got to help clean Jude up just a little bit today and even got to give him small amounts of breast milk on a pacifier! (I got to take his temperature under his arm, but with a nurse's close supervision, of course. :) ) He was very cute with his little paci, and Rose was very encouraged, even by this opportunity to do something small for our little one.

Over the next few days, please pray with us that God will continue to work miracles of healing in Jude's body and that He will prepare our little man for his surgical repair. Also, please pray for continued wisdom, skill, and discernment for the medical staff taking care of Jude. We have been blessed with some truly incredible nurses, physicians, respiratory therapists, perfusionists, pharmacists, nutritionists, social workers, and more! It's amazing how many people from various vocations and backgrounds have been instrumental in helping care for our son.

As we begin a new year, we thank God for His faithfulness and mercy that He has shown to us since we learned about Jude's diagnosis, and we look forward to His continued work in our lives and the advancement of His kingdom in the coming year!

    Pray then like this:
    “Our Father in heaven,
    hallowed be your name.
    Your kingdom come,
    your will be done,
        on earth as it is in heaven.
    Give us this day our daily bread,
    and forgive us our debts,
        as we also have forgiven our debtors.
    And lead us not into temptation,
        but deliver us from evil."
(Matthew 6:9-13)


  1. I checked the blog frequently throughout the day and am so happy Jude had a good day! I'm starting my 2012 praying for your Jude!

  2. happy new year, little man!! praying that this is another year of miracles for such a perfect little boy.

  3. Wonderful to get a good report this morning. Continuing to pray for you all...

  4. Praising God with you for how far Jude has come and pray that the Great Healer will continue to strengthen Jude's body - to open his lungs more fully, for the PH to be gone, and just for him to get stronger each minute, each hour, each day. May God renew your strength each day and give you what you need to continue to press on.

    Happy New Year!
    Liz, mama to CDH Survivor Finley and big sister Rowan...

  5. This made my day. Love hearing good news about Jude!

  6. By favorite prayer to pray. It is all encompassing. You have my love and prayers.