For starters we couldnt have asked for a better doctor here at CHOC. Dr. Cleary is on top of his game. He is no BS kind of guy—precise, focused, informative, careful, exact…definitely a Godsend at this point of time. He is so precise that he was making sure the nurses are drawing their blood gases consistently. Drawing blood gases is something nurses do second nature, but he is so exact that he wants to make sure all draws are exact so that they dont treat something based on the wrong lab numbers.

After rounds this morning it was decided that we will continue to make forward steps as Jane allows. Yesterday Jane was put on NO (nitric oxide), a gas that decreases the resistance in the lungs. She was at 80ppm (parts per million)—a dose that the nurse and respiratory therapist have NEVER seen before all their time working here. The nurse said that when she gave report to the night nurseĀ on Jane and told her she was on NO of 80 the nurse questioned her and said, Did I hear you correctly, 80??? Since then we have been able to come down to 20ppm which is the normal therapeutic dose used. So far Jane is tolerating the move. Her chest xray this morning shows a very small improvement in her lungs from yesterdays xray. Overall, there arent very big plans for today. Jane is so critical that any big move can cause her to fall in either direction so the team may make a wean on her life support and then give her several hours to see if she tolerates it. Slow……………..and…………….. steady…………..

The overall consensus this morning is that they dont know what the exact issue is with Jane. They arent even 100% sure that it is an infection causing her to have major lung issues now. What they DO know is that Jane has a very critical and rare heart condition. All of her other complications are made worse because she has such a sensitive heart. If a healthy baby had an infection in her lungs they would start antibiotics and most likely see improvements in the next 24-48 hours. Not the case with Jane…it takes much longer. If a healthy baby has liver disease they would treat it and see improvement quickly….not the case with Jane. In addition to all of her complications she has this underlying heart condition that adds to the mystery and severity.

We have not lost hope….she is the STRONGEST baby I know.

6 comments on “Update

  1. Ts. Manya Kor. on said:

    Thank you for the update! (I’m driving Jess nuts) For me, having the updates helps me know what to focus on in my prayers and praises. SLAVOO BOGOO!!! Jane made it through the night! Oh my gosh – her resilience – her stamina – her will . . . We are standing with you CONSTANTLY in prayer and praise to our amazing, gracious, merciful and loving Lord.

    • Tara on said:

      I have been driving Jess nuts too! Thanks for the updates as well! I have been in constant prayer from yesterday evening….allllll night…..and most of the day. Jane is one tough cookie! Hugs to you guys! Love ya!

  2. Nadya R. on said:

    We are all in this together- with God at the helm.

  3. Jo Paddison on said:

    We are praying for you and know God has a plan for for Jane and you.

  4. Ts Monya K on said:

    SLAVA BOGO indeed. What a fighter your Little Jane is! Such a precious little one that we have all fallen in love with. Continuing to keep the 3 of you & your medical team in prayer……Guidence, Strength, Knowledge, Wisdom, Peace

  5. sandra tolmachoff on said:

    Keeping you and your daughter in my prayers! Know that we are standing together in prayer with you, lifting Jane up in prayer each and every day. I really appreciate the time you give to giving us updates! Thank you. May God bless you continually on this journey and guide you and Jane’s medical team. Love to you, daniel and Jane.
    Ts Sandra

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