4/3/2016 – One week at home (sort of)!

One week ago today Judah was discharged from the hospital – and minus an overnight trip back to Cincinnati for a follow up scope we have been home resting, healing, and getting used to this new trach-free lifestyle. 

Judah has come so far in the last week since coming home. While he is not back up to full strength yet, getting out of the hospital and back home where he can move around, play with his toys, see more familiar faces and play with his dog and cat has made such a huge difference in his recovery. He has almost completely kicked the withdrawal that was weighing him down after spending so long on such heavy medications. And although he still cannot stand up for very long, or take steps on his own, he has been crawling all over the place refusing to stay put.

Being back at home has given us the chance to take a deep breath of relief, and really start to see a new life emerge without the trach – and the care that goes with it. Taking Judah out of the house no longer requires 25lbs worth of extra equipment like suction machines, emergency trachs, ties, suction catheters, and so much more. A quick trip to the grocery store or mall is exactly that, just pack some diapers and his meds and food in a backpack and go. For many trips we don’t even need a giant stroller anymore. Even much of our routine at home has changed and become so much simpler – things like bath time and getting ready for bed take a fraction of the time they used to. Overnights and packing for trips no longer require every suitcase in the house just for medical equipment. This is a life we could certainly get used to. We frequently stop to realize it has been over a month since we’ve changed his trach or done trach care. After so many years of doing all this extra care every night, we certainly do not miss it – and neither does Judah!

Speaking of a new life, we’ve really gotten to hear Judah practice his vocalization and noise making! For almost his entire life Judah has had that trach in and has been completely silent, unable to even cry or scream, and he really only started to make a little bit of noise within the last few months. With the trach gone Judah is truly finding his voice, and we have gotten to hear quite possibly the most magical sound we could have ever imagined, his amazing laughter! Judah loves to laugh and giggle, and it just melts our hearts to hear and see.  As he gets his strength back, becomes more comfortable and confident, and works closely with his current speech therapist at the Children’s Institute and hopefully with speech language pathologists if we can get him into the school we want, Judah’s vocal communication will really take off above and beyond the sign language he has been relying on. But this is a long term goal, for now we’ll enjoy the giggles and work from there:

One last follow up scope in the OR back at Cincinnati Children’s Hospital on Friday morning showed the doctors that the anterior (front) portion of his graft continues to heal, albeit a bit slower than the posterior graft did. But it is healing and his doctors are happy with the progress. His vocal chords look great and his airway is wide open. They do not want to see us back for another follow up for a whole month! That’s one month of healing and recovery without a trip back to Cincinnati. We can’t wait to see how much changes in that time in our new trach-free lives. When Judah is ready we will have him return to daycare to play and socialize and prepare for school, and we will continue to get him out and about during the week and especially our family time and outings on the weekends.

Judah is the true trooper in this story, but we have so many people to thank for helping us make it through this last month away from home: to Rodef Shalom as well as the Sisters of Mercy religious institutions for providing so many prayers throughout their entire congregations. to Chai Lifeline for supporting us with meals and care while we were so far away from home. to Mommy and Daddy’s employers; the Borough of Edgewood and Carlow University, for their incredible understanding and flexibility, as well as gifts, support, and soup. to Judah’s grandparents, for helping us to take care of (and improve!) our house, watch our pets and to keep things running at home while we were away. to Judah’s amazing aunties, for everything they did to help us in this time of need, from the smallest things like providing distractions to helping us secure places to stay (and so much more it would be impossible to list). And really we have to thank all of you, everyone who has come to this site, sent their love and support, prayed for and even just thought about us during this journey. We truly could not have made it without all of you, directly and indirectly. Is it amazing to see how the love has raised us up, given us hope and strength to go on, to move beyond the most difficult days and continue to be there for Judah in every minute. Our most sincere and deepest thanks to all of you.

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As we settle into this new life, this new journey, there will be plenty of updates along the way. For now, we continue to leave you with all our love,
J-N-J

13 thoughts on “4/3/2016 – One week at home (sort of)!

  1. Wonderful news of healing and equipment free life. Judah’s laugh is contagiously precious. Will continue to pray for full repair healing. God Bless

  2. Such a glorious laugh! and so happy for all of you! You all deserve this progress and any thing that makes your lives easier. Lots of love and blessings on you three :)

  3. Woooo— this amazing Update was such a BLESSING!!! To hear Judah laugh was such a full delight– THANK YOU so very much for sharing that precious video ;-). May the blessings continue to abound for each one of you– woooo, I can feel the *relief* of no longer having to do all that was needed while Judah had his trach…. but you know, what struck me too was that I never heard you *complain* about having to do it when it was the thing helping him breath and be alive and grow and develop. FULL of gratitude at this amazing turn in your lives ;-).

    With lots of love and hugs,
    Susan (and everyone at Rodef Shalom!)

  4. I am rejoicing with you! Thanks, especially for the bath video. How wonderful it must be for all of you to hear Judah’s giggles.

  5. Dear Friends,

    Thank you so much for this wonderful update. ……just to hear the laughter is such a blessing. May God continue to bless all of you.

    Prayers and much love,

  6. Judah laughs, and the world laughs with him! We could not be happier for you all.
    Much love,
    The Hughes Family

  7. Thank you J-N-J for sharing your experience, your worries, struggles and BIG VICTORY with all of us. Your story helps us to put things in perspective and appreciate the small things in our life that we usually take for granted.
    We wish you to have a very uneventful, routinal healthy and happy life and feel the joy that this “boring” life will bring you. Love.

  8. What an amazing update! So happy for all of you!! His laughter is such a joyful noise! Welcome to your new life!

  9. Dear J-N-J way to go. You all so incredible. We hope to see you soon in great shape and visiting us in Boston. Specially you need to pack much less now.
    Wishing you everything the best.

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