Starting our Life with a Trach……

Sorry we have not been around for a while, but as you all know we had decided to Trach Sophia. We had everything scheduled for monday, but last thursday evening Sophia suffered a massive bloody nose and was rushed to the ER that night. We were able to stop the bleeding but decided she needed the surgery earlier rather than wait. So Last Friday they wheeled our little girl down to the Operating Room….I was trying to be so brave for her and smiling at her at telling her “no more mask” but right before she went in I looked at her and began to cry, Sophia being the smart girl she is started to cry too, and I just felt so guilty for upsetting her….my heart was in pieces that my little girl had to go into that room and I couldn’t be with her. Thankfully the Dr. let Vinny “scrub up” and take her in and transfer her to the table…..we waited about 30 minutes before they came out and told us everything had gone perfectly, “WOOHOO” my heart was so happy….I couldn’t wait to see her, when they wheeled her back to her room she was still groggy and it took her about another 30 minutes to wake up, but when she did, she wasn’t scared at all!!! She was so comfortable. Her recovery has been amazing, she is such a trooper and inspires me everyday. Learning about the Trach is scary and new but we dove right in and are feeling more and more comfortable.  We have received amazing support from the SMA community from both NIV and Trached families, we could never have gotten through this without all of you, thank you so much from the bottom of our hearts!!! Today Sophia is getting her first Trach change and then Vinny and I will have to learn how to do this. Changing the Trach is very important to learn, God forbid there is a plug in it you need to be able to swap it out. So Vinny and I will not leave until we are comfortable doing it ourselves. Sophia also needs to be transitioned to her home vent, which also makes us nervous, since the hospital machine is different from her home vent. But we are saying our prayers that everything goes smoothly. We can already see the change in Sophia, and know she is so happy not to have to wear the mask 24/7…..we are hoping this “new life” will open more doors for our little warrior princess, she deserves anything and everything, and we will never stop at helping her achieve her goals. Thank you to our friends and family for your prayers and well wishes. thank you to everyone who sent gifts and cards to Sophia and or helped us take care of Jackson… Thank you to everyone who took the time to visit Sophia in the hospital, it means so much to us!!!

About Catherine Gaynor

Mom to beautiful Sophia.... SMA Type 1

Comments

  1. Awesome!!!! says:

    Great job guys!!!! :)

  2. michele says:

    dear catherine and family~

    i cry tears of joy, for the most part~but no one wants to
    see a baby in the hospital~it is so great that sophia sees
    your deep love~ and having you with her has, no doubt, helped in
    her progress and wellbeing~
    ” A heart that is joyful does good as a curer…”
    Proverbs 17:22a
    ~*~ i am glad she is ”free” of the
    mask~and hope that this will be better for her….everyone is so
    happy to see sophia’s sweet face~!!!~*~
    thank you for sharing your moments with us~

    ~*~always sending love and good wishes~
    keeping you all in our prayers…
    Michele and family

  3. What wonderful news!!! I am so excited for Sophia to be mask free. Thank you for sharing a picture of her beautiful face unobstructed. Your faith is so inspiring. xoxo from a stranger who has fallen in love with your daughter.

  4. Lisa Dulara says:

    Good news! Continuing to pray for her recovery and continued good spirits.

  5. Christine says:

    Sooo happy Sophia is doing well and mask free. You and your family inspire me everyday! I am just in love with your warrior princess! Just like Devon I am a stranger in love with your daughter and family! You and your family remain in my thoughts and prayers everyday! xoxo

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