March 17th We’ve moved!

This weekend brought several changes.  Most importantly, we are movin’ on up in the world and headed to rehab- hooray!  (Now, there’s a sentence I never thought I’d write….)

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I can’t say that Jack is more comfortable, or that he is particularly pleased at this change, but to us it signals a new and very different part of the journey.  Instead of critical care, the service now responsible for Jack is now general pediatrics.  We’ve gone from crisis to monitoring.  As parents, we used to be in the role of watchdogs, standing vigil over Jack, constantly waiting for something to go from bad to worse.  So, it is strange to us when nurses tell us that Jack doesn’t need to be suctioned every hour, that it is time for him to start to learn to manage that on his own.  Or, that we should hold off on giving him all of his PRNs, and see how he fares without the aid of Tylenol or other pain meds.  It feels a bit like being in a whole new medical culture, where once again we need to learn the rules, the language, the people.  And most importantly, we must learn to trust this new team, and where the limits of that trust lie.

Unlike in the PICU, where the service was tied to the physical location, many services operate here in 2A.  Once Jack’s fever has subsided, once he has moved to larger, meal-type feeds rather than a continual feed, and once we become more assured that his risk for seizures (following his brain surgery) has lessened, responsibility for Jack’s care will be transferred to the rehab unit.  While he is getting therapies now, it will be more predictable and intensive when we move to that unit.

In today’s news, Jack had a fantastic visit with PT.  The therapist was very encouraging, and mentioned that Jack’s hand and leg movements were improving at a good clip.  Jack is also tolerating touch and movement better than he was a week ago.  The other good news is that Jack’s CSF culture has remained clear, so we seem to have dodged the shunt infection bullet for now.  His lung cultures came back with two bacteria… the tracheitis bacteria I mentioned in my last post, and unfortunately, a staph infection.  This is not the dreaded MERSA type staph infection, but a type which responds well to antibiotics, so the pediatricians didn’t so much as bat an eye at it, though it makes me very uneasy.  

So, while I was going to encourage visitors now that he is out of the PICU, it might be safer (for you) to wait until the infection is diminished.  

Finally, I want to end this post by getting all gushy about the PICU.  We had amazing care there, and I’m sure the care here in 2A will be as good, though different.  I don’t think many of the PICU staff know about this blog, but I wanted to give a shout-out to some of the special people that come to mind.  Kathy was with us the day of Jack’s emergency surgery; she held me together that day.  Chuck’s thoughtful, whole-picture approach (as well as his gentleness and good humor) helped us through the hard days before the neurosurgery.  Kelly’s vigilance as Jack recovered from his neurosurgery and then his trach / GI surgery made it (almost) easy for John and I to relax and focus on being with Jack rather than flipping out about every drop of the drain or every dose of medication.  Her firm but loving approach makes her perfectly suited to the job.  Ben, who has inspired me to rethink much of how I approach teaching and serving others, is someone I would hang out with in a second.  And Julie, whose real-world attitude helped us to negotiate with doctors several times and kept us laughing… are just a few of the nurses who have been particularly amazing.  Special thanks also to Jen, our social worker, a flesh-and-blood angel who manages to show up exactly when you need her, Kieli, the resident whom I’ve mentioned in previous posts, Chris, one of the fellows who calmed me in a few particularly panicked moments, and all of the unbelievably talented, focused, and generally awesome attending physicians of the PICU.  We are amazed and humbled by all of you.  Thank you for keeping Jack alive when I thought there was nothing that could.

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12 thoughts on “March 17th We’ve moved!

  1. Jen Bibbens Montague

    Great news Meg! So glad Jack is doing well and able to make this next transition. Keeping you all in our thoughts and prayers! Go Bounce Back Jack!!! 🙂

  2. Thanks for posting this pic, Meg! Shows me, once again, what a handsome little warrior you and John are blessed with! Keep up the good fight Jack! You can do this! You have the entire Grotti-Gaffey family (and friends) that stand with you. We are all ready to help you and your family, in any and all ways, through this recovery. Even though some of us are many miles away, we stand together with you and your whole family! God Bless and love to you all!

  3. John Green

    Fan flippen tastic!!!!!
    I talked with Susan D. after her visit on Sunday. Very encouraging indeed. I understand your day with Sam was great as well. Make sure John shares those cookies with you. Change out of the swamp gear and put on some new shoes for the new road ahead.

  4. Jill Gaffey

    Wow! I am so happy to hear Jack has taken the next step in his journey of recovery. I have many “Jack Blessings” to put into my gratitude journal tonight! Change is hard but ultimately good. I can’t tell you how much I appreciate the pictures of him that you send- they are so comforting to me. Please give him a kiss for me. Hope to see all of you soon!
    Love, Aunt Jill

  5. Megan Oakleaf

    I can’t tell you how happy I am to see Jack’s precious little face! I’m so glad you’re moving and hope you start feeling comfortable with your new care family soon!

  6. Ruth Gaffey

    Amen! I have to agree with everything said here about the PICU staff at Nemours. They held our families up when we thought we would fall. Their whole family approach was appreciated by all.
    And a thank you to Bob for the mantra
    It’s Jack’s World we just live in it.
    Ruth

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