CF Exacerbations

6 Jun

Bridge from parking garage to JHH

Good morning!  Many of you probably saw the Facebook post on our Jody Needs Lungs page last night that Jody was admitted to Hopkins yesterday evening.  This was, of course, related to his Cystic Fibrosis, but completely unrelated to transplant.  This is a typical CF exacerbation, like those you have read about many times here on my blog.  It’s hard to know what to say (to keep you interested) that hasn’t already been said, and yet, this is our life.  This is Cystic Fibrosis.  While you might read this and think, “Oh, it’s just another infection,” to us its a lot more than that.  It impacts our living, working, and for Jody, breathing.  Even though a hospitalization always puts a kink in life, I’m so thankful for this “little” exacerbation because I know it could be a lot worse.  It could be pneumonia, or something worse, and he could be very sick; too sick for transplant.  So I’m counting my blessings and enjoying the time I have to spend at his bedside, making memories.

Airway clearance by chest PT

This time Jody’s symptoms primarily included increased shortness of breath, requiring more oxygen use, complaints of frequent headaches, especially through the night or when napping, and feeling more tired.  Again they want to check blood gases (both venous & arterial) to see if his carbon dioxide (CO2) level is too high.  Today he was started on his usual triple IV antibiotics, and he continues with his standard hospital services, such as nebulizer treatments, rehab, and chest physical therapy (PT).  Above is a picture of Jody from his chest PT session this morning with therapist, Lauren, who is pounding on his back and sides.  This is a form of airway clearance which helps to loosen and break-up the mucus from his lungs.  At home Jody wears a mechanical “vest” to shake the mucus loose, helping to clear his airways.  Jody also had lung function tests done this morning and his lung function is now down to 22%, the lowest it’s ever been (which explains the increased shortness of breath).  We hope that after this course of antibiotics that number will improve ever so slightly.

If things progress as planned, we don’t anticipate this being a long hospitalization.  Jody will finish his three weeks of IV antibiotics at home after discharge, as he has done many times in the past.  He also continues to wait for the call for his new lungs, which we pray will come before these “little” exacerbations become more serious, hindering Jody’s ability to get a transplant.

Once again I want to thank all of you who are praying for us and continuing on in the “30 Days of Prayer for Jody” prayer challenge.  Someone recently asked me if we feel prayed for, and we do.  Thank you!  Please keep the prayers coming our way.




4 Responses to “CF Exacerbations”

  1. Sheryl June 6, 2014 at 1:34 pm #

    Sending our love to you and hoping you
    Will be home soon!

  2. Inhaling Hope June 6, 2014 at 2:12 pm #

    I am thinking of you and your family. I am glad he is only experiencing a “little” exacerbation, but I know even the little ones still stink!! Hope he feels better soon,

  3. genablaine June 6, 2014 at 4:40 pm #

    Thinking of you all! It’s so nice he can do IVs at home. I know Sonia was always happy when she could do that.

  4. Marilyn Titter June 11, 2014 at 7:54 am #

    I have been away a lot and just caught up with email and facebook. My prayers are with you all as I to am praying daily, and it will go further than the 30 days. My love to you all. Marilyn

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