The Break’s Over

26 Feb

Many of you probably saw on our Jody Needs Lungs Facebook page that Jody was admitted to the hospital yesterday.  This post will fill you in on all the details.

People often ask me how Jody is doing, and over the last few months my answer has been, “Pretty good, all things considered.”  We’ve very much enjoyed the break from the hospital after spending so much time there late summer/early fall.  Naturally we knew this break wouldn’t last forever and sadly it’s over, at least for now.

Two weeks ago Jody had an appointment in the transplant clinic.  At that appointment his PFT’s (pulmonary function tests) were close to 30%.  He was feeling a little tired but otherwise okay.  Since then the tiredness has increased.  We know that this can be a sign of a CF “flare-up” but it is so easy to justify that symptom away, chalking it up to him being more active.  Nonetheless, we kept watch.  We’ve since noticed that he’s been coughing a little more, feeling more chest tightness, headaches, night sweats, and even had some blood-tinged sputum.  Those things combined, we could no longer deny the inevitable, and made the call to the CF clinic.  Jody was asked to come in that day and to pack a bag because, based on his symptoms, he would probably be staying.

Jody’s PFT’s in clinic yesterday revealed a 4% drop (now at 26%) in a matter of two weeks time.  This is a little alarming, especially when combined with the symptoms described above. The doctor was also a little concerned about his complaint of headaches, especially at night.  Once again they suspect a build-up of CO2 (carbon dioxide).  He currently sleeps using 2 liters of oxygen via nasal cannula, but it might not be enough.  They mentioned possibly even using CPAP at night to keep his airways open should it be warranted.  And so… to figure this all out, Jody once again finds himself at “Hotel” Hopkins.

The plan right now is round-the-clock triple antibiotics to fight the infection in the lungs, and arterial blood gases to confirm if his CO2 level is indeed too high.  In addition to that he gets his nebulizer treatments two or more times a day, chest physical therapy and regular physical therapy three times a day, blood work, chest x-rays, visits from lots of doctors (this is a teaching hospital), and visits from the CF team, just to name a few.  Even his physical therapist commented this afternoon on how many people were in and out of his room this morning.

One other thing I should mention is in regards to Jody’s future lung transplant.  There seems to be disagreement among the CF team here as to whether or not Jody should be made “active” on the list.  Some feel the time is now, while he is healthy enough to withstand the surgery, and others feel he should wait, so as to not start “the clock” (on Jody’s life) prematurely; hoping he might bounce back from this infection, buying him more time.  It’s a fine line to walk, and I can argue both sides.  Thankfully, I know we’re in good hands, that they’re keeping a close watch, and I pray that God himself will make it quite clear when the time is right.

There is no way of knowing how this infection is going to play out.  It could improve with the current antibiotics and we could get another break from hospitals.  Or, on the contrast, it could be the beginning of more to come, which would indeed push us one step closer to transplant.  As I’ve said before, only time will tell.

Now you’ve been updated and know a little better how you can pray for us.  Thank you to those of you who have already been doing so, it is always appreciated.  Thank you also for reading.  I’ll keep you updated as able and if anything changes.

11 Responses to “The Break’s Over”

  1. genablaine February 26, 2014 at 6:07 pm #

    I’m praying very hard for Jody to recover from this bump in the road! Thanks for the udpate!

  2. shelly February 26, 2014 at 7:20 pm #

    So sorry to hear 😦 Would you mind posting the address to send cards to him at the Hopkins ‘hotel’? Please let me know if you need anything!!

  3. Marilyn Titter February 26, 2014 at 7:44 pm #

    Give me a ring if you need anything, and as always you all are in my prayers, and thoughts. Hang tight, you are in good hands. Find out what Dr. Merlo thinks about time for listing, I trust him very much!

    • CF Wife February 26, 2014 at 9:37 pm #

      Dr. Merlo is the one who wants to wait, and I totally get it.

  4. Dixie February 26, 2014 at 8:03 pm #

    Praying for the antibiotics to work, praying he is able to rest in the busy environment, praying the headaches cease & the 02 level increases. Also praying for safe travels, rest & strength for Tiff and for the girls as they once again miss Mommy & Daddy. May you feel God’s presence in every thing you encounter & every decision you make. Love to you all. ((hugs))

    • CF Wife February 26, 2014 at 9:40 pm #

      Dixie, thank you for praying all those things for us (and remembering our girls who are too young to truly understand all of this). It’s reassuring to hear how you are praying for us specifically.

  5. Ruthie February 26, 2014 at 8:12 pm #

    Though my heart just aches when I read what is reality for you, I am so thankful that you keep us updated. Holding you with much love – and continued prayers for all!

  6. Sheryl February 26, 2014 at 9:34 pm #

    Thinking of you all.
    Get better Jody!!!!!

  7. Kendra February 26, 2014 at 11:24 pm #

    Thanks for filling us in, Tiff. I’m praying that you can be quickly reunited at home! Love to your family from the Gaschos!

  8. Lisa Weems February 27, 2014 at 7:23 am #

    Jody, you are always in our thoughts, we are all wishing and hoping you will beat this and come home soon!! Tiff, let us know if there’s anything we can do for you. Take care!

  9. Karen Crouse CNM February 27, 2014 at 7:11 pm #

    Prayers for you all Tiffany – Ronn and I will make it a daily prayer for health restoration. Hang in there and call if you need a friendly ear to listen or a shoulder to lean on or arms to reach out and hold you awhile.

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