Feb 21-22… Long Night

It’s about 4:50a.m. and it has been a rough night.  About thirteen hours ago, Jack was taken off of his breathing tube as planned.  It was so good to see Jack’s little face again, to see him open his eyes and look purposefully around at us.  He even picked up his blankie in one hand and passed it to the other- a small but truly magnificent feat for a baby fresh out of brain surgery.  We cheered.

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(This pic was taken on Monday, before surgeries, etc.  There are a lot more “accessories” on Jack now. Those of you with eagle eyes may be able to note how swollen his head looks.  Thankfully, it is much better now.)

Unfortunately, for several hours after the tube was removed, we could only sit by, stroke Jack’s hair or sing to him as his throat became more and more congested.  Partially because the tube caused so much inflammation, and also partially (or primarily) because the tumor lives in an area of the brain that is associated with larynx control, Jack struggled to keep his airway clear, as he has lost his ability to cough properly.  Nurses were having to suction his throat every five minutes to keep it clear.  The agitation and discomfort of the suctioning caused Jack’s ICP to increase (this acronym deals with pressure in Jack’s head- I think that stands for “inter-cranial pressure”, but don’t quote me on that.  –Did I mention what time it is?).  All night Jack’s medical team has danced the dance of how much painkiller is acceptable vs how much will compromise his respiratory drive, whether to give him a constant supply of saliva-reducing medicine vs. whether that will cause secretions to thicken and ‘clump’ in his lungs, whether to suction him to give him some relief vs. whether to keep him relatively calm, so as not to exacerbate the ICP….  Sometimes, you feel like a ping-pong ball during these discussions.  I’m glad we have had our “dream team” of two nurses tonight (Angie and Mike- who is himself a dad of triplet boys!)

Some relief was obtained when Jack was put on a medication to dry up saliva and propped up differently in bed so that his airway was more open.  He was then able to sleep a bit, though there was concern about a partial lung collapse, necessitating a midnight x-ray.  (It turned out fine, just a bit of congestion).

Perhaps because of all this drama swirling around us, I failed to take take proper notice of the air of awe that descended upon the small crowd of RNs, RTs, and the fellows in the room when a tall doctor in a white lab coat swept in to inform me of the meds Jack would be put on.  He also informed me that if Jack could not breathe and protect his own airways adequaely, he would be re-intubated.  I asked about the risks involved in long-term intubation.  He patted me on the shoulder and called me a smartypants.  He told me we should deal with those issues when we know if intubation is actually going to happen. I later learned that this was Dr. Andrew Costarino, who was (until very recently) the Medical Director of the Surgery Center, Division of Surgical Anesthesiology, Department of Anesthesiology & Critical Care here at Nemours.  He just happened to be on the floor helping out in the PICU that night.  The RT informed me that Dr. Costarino wrote a seminal article that was (for a time) the most highly accessed piece in the history of medical literature.  (I’d love it if someone could find me that citation– I believe it had to do with determining the level of oxygen saturation in the blood for pediatric patients.)

UDPATE, 8a.m.; Jack gave his dad a small but indescribably beautiful smile this morning.  He ran his fingers through the red fuzz of a little cardinal bird toy.  He is alert but calm… at long last.  I hope that our trials last night will have led to a day of rest for Jack.  I’m looking forward to playing music and reading to him today.  (And pigging out on the delicious blueberry muffins that Megan and Theresa dropped off.  Thanks guys!)

Thank you to everyone who commented on the last post or who sent us your love via FB.  (I’ve finally fixed the comments on the blog, I think, so you should be able to see them now.)  Yes, you all are very right- Jack is one hell of a little fighter.

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10 thoughts on “Feb 21-22… Long Night

  1. Anne Porier

    Sending much love and many prayers for Jack and his family. Lots more coming from Wallingford teachers and school librarians! We are all rooting for Bounce Back Jack.

  2. Demaris Hollembeak

    Many prayers and positive energy vibes are being sent your way. I’m so stunned at what has happened to your dear little boy and to you and your families. Bless all of you.

  3. Megan Oakleaf

    Could it be this article? According to Web of Knowledge, it’s his most highly cited, but I’m on my phone and using my thumbs so I’m not at my best. 🙂

    Magnetic resonance imaging of the upper airway structure of children with obstructive sleep apnea syndrome.
    By: Arens, R; McDonough, J M; Costarino, A T; et al.
    American journal of respiratory and critical care medicine Volume: 164 Issue: 4 Pages: 698-703 Published: 2001-Aug-15

    I’m so glad Jack is in the best medical hands possible. He’s already in the best parental ones!

  4. Sue Smayda

    Plantsville Congregational Church is sending hundreds of healing prayers to Jack, your family and everyone who touches Jack. God’s power is felt through even the smallest touch.

  5. Jim Gaffey

    News of Jack’s smile has brightened everyone’s day here in Delaware and around the world. I just learned that a convent in Belgium is praying for his recovery. Our little boy and his parents continue to inspire people at home and around the world. Love, Da (Jack’s maternal grandfather)

    1. jean jones

      Geez Jim , you never told me, that you were the new Da! Now Jack has 2 Da’s fighting for him, because Dad is with us!! Love you Jeanie

  6. Amy Humphries

    The entire staff of Wallingford Public Library sends lots of love and hope to all of you and especially to Jack. Thank you for sharing this journey with us.

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