Daddy’s Diary/ May 26th

Azathioprine, Septra, Predninsone, Tacrolimus, Bumetanide, Levertiracetam, Nystatin, Ranitidine, Spirolactone.  This is not a lesson in Latin.  This is a list of all the mediations Addie is on. (It is by no means complete either.  I have just left out the more routine ones.)  With our discharge from hospital rapidly approaching, we are now responsible for administering all of these drugs sometimes more than once a day.   The little princess does reasonably well with most of them too.  She isn’t a fan of few we have to give her orally, but through a bit of negotiating we manage to stuff it all down there.

Now that the intensity of the first month has worn off, the prospect of going home is actually a bit daunting.  A transplant is not a cure for heart failure, it is just a treatment.   There will be a lifetime of medication, and tests, and hospital visits, and infection control, and whatever else we haven’t thought of yet.  I’m sure all of this becomes routine, but right now it is all just a bit overwhelming.  Strong family support has made a huge difference in how we are approaching the next few weeks.  Knowing we are not alone in caring for Addison has made this challenge seem a little less intimidating.

Daddy (Aaron)

6 thoughts on “Daddy’s Diary/ May 26th

  1. Awww poor bean has a laundry list of meds! Will it get shorter as she gets farther along in her recovery?
    We are pulling for you over here and attempting to send vibes of strength to you and Elaine (finger tips to temples and lotsa concentration). Having an unwell child will put a perspective on your life you could never have imagined. . . .but the blessings will seem all that much more intense and precious. You and Elaine are doing a wonderful job with keeping the positives at the forefront!

  2. Your little one is soooo amazing!!! I know going home sounds daunting but you will soon get into a routine and will not think twice about giving meds and inserting her tube. It will become second nature. It’s nice that you have your families to support you. Take care and enjoy every moment of your child’s life. She is a very precious child.

  3. We are absolutely thrilled to hear that you’ll all be heading home together as a family! We’ve been glued to your story since we first found out and have been sending positive thoughts and prayers daily, in addition to keeping a candle lit at our church in Addison’s name. Please don’t hesitate to let us know if there is anything we can help you with.

    Take care, keep in touch and enjoy every moment.

    Lots of love,
    Geoff, Krista, Jordan & Noah Fontes

  4. Well she just looks freakin’ amazing!
    Don’t worry about going home… you guys will do spectacularly well, and you’ll be moving everything breakable to above waist level before you know it.

  5. So proud of you two and your baby girl. What an unbelievable journey you find yourselves on. Knowing your determined spirit(s) and your
    strength of character I have no doubt you will not only survive all of this, but actually thrive. You are already an inspiration to all of us, and to so many more people you haven’t even met. We are all so grateful for this outcome and can hardly wait till there’s some normalcy to your lives !! 3 cheers for Aaron, Elaine and Addison!!!

  6. Your princess is more beautiful with every posting. My staff at St.Bernadette School continue to keep each of you in our daily prayers.
    Love and Lots of Prayers
    Lillian Albrecher

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