Thursday, March 5, 2015


Things have not been going well since the IVIG treatment yesterday. We got home a little after 3PM and Maddy was really tired but that's to be expected. What we didn't expect was the drastic shortness of breath Maddy began to experience yesterday. As mentioned before Maddy's lungs are failing so she has been having more difficulty with shortness of breath even while on oxygen. She started having more episodes yesterday afternoon, even when sitting and doing nothing. By yesterday evening it was really bad so we called Hospice. They sent a nurse out and broke into our emergency hospice kit to give her Morphine drops. She takes these under her tongue to help fight what they call "air hunger". It helps calm her down and also opens up her airways some. She can have the liquid Morphine every two hours to help her breathe. She and I were up most of the night last fighting this "air hunger".

It's almost 10AM and she is currently resting. I do not know if this new development is a reaction to the IVIG, one of the side effects listed for the med is shortness of breath but she has never experienced that side effect before, or if her lungs have just begun to fail to the point where this is our next forever battle. In either case I am taking the day off again to stay with her and help her through this. As always prayers are appreciated.


  1. Davis, you and Maddy are in my prayers constantly. (Is there such a thing as a prayer stalker?) God bless you both <3

  2. Continuing to pray for Maddy and your entire family. Wha a strong fighter she is. Praying for peace and strength.

  3. Davis, Just heard the news on the radio. Please know that you have my continued prayers and sincerest condolences. May you find strength and peace in your faith, knowing that Maddy is at rest and breathing deeply in the love and light of God's presence.


  4. Davis -
    I am so sorry for your loss. Praying for God's peace over you during this time. What a strong fighter and inspiration for life Madeylne was. In the end she won the fight by taking CF head on. Thinking of you and your family. Take comfort knowing she is breathing easy today.

    Weeping may endure for a night, but joy comes in the morning. Psalm 30:5

  5. I don't know you, you don't know me, but I saw a post about your loss and I want to tell you I'm praying for you. In the post there was a link to this blog and I was reading it all the morning, learning a lot. It touches my heart. I'm not praying for your strenght because I could see you are the strongest person. (Please excuse my English, I'm from Mty, México)
    Maddy IS an inspiration.
    I know is nothing, but my heart and my prayers are with you.
    Saint Mary of Sorrows comfort you.