Sunday 7/6 – Out and About, and back to the hospital

The last couple of weeks have brought a lot of outings as summer really kicks into full swing. Judah has been going to the Children’s Museum close to twice a week, to the parks and playgrounds, got to walk with Team Truncus at the 2014 Congenital Heart Walk, and has even started going to day care at the incredible Child’s Way at The Children’s Home. But while all of these outings have been great for Judah, his increased interactions with the world led to his first cold. With Judah’s weakened immune system and heart, a simple cold quickly led us to a 4 day stay in the Intensive Care Unit at Children’s Hospital this week. 

Two weeks ago Judah started day care, and he loved it! The staff at Child’s Way absolutely love him too, some of them even remember Judah from the time he spent as an inpatient at The Children’s Home, and they cannot believe how healthy he looks and how well he is doing. Judah’s therapists even come to visit him at day care and have been teaching the staff all of the words he knows to help them communicate. Judah continues to improve with his speech (sign language) and feeding therapy. Although he still does not take any food by mouth, he is getting a lot more comfortable playing with food, touching the textures, as well as putting small bites of cookies and crackers into his mouth and working on swallowing them. Judah is also becoming quite the regular at the Children’s Museum!

Then last weekend Judah joined Team Truncus as their mascot for the 2014 Congenital Heart Walk! We again thank everyone who donated to our team and helped Team Truncus raise over $2000 for CHD Research, Awareness, and Advocacy. Our team was comprised of some incredible friends, including two adult truncus survivors! It was a pleasure and an honor to get to walk alongside such amazing people, and to walk for such an incredible cause. We will definitely be taking part in this next year, and hope even more people can walk with our team and help us raise money during the Heart Walk!

After all of the excitement of that last week and the weekend, Judah had been showing some beginning symptoms of getting sick, and on Tuesday July 1st his fever spiked and he was having difficulty breathing, requiring us to put him back on ventilator and oxygen support (Judah has been off the ventilator completely since February of 2014, and off of Oxygen since his 2nd heart surgery in March of 2013), and heading to the Emergency Room for his first ER visit of 2014. After being admitted to the hospital and moving to the ICU, a few days of oxygen and vent support, antibiotics, steroids, and other treatments, Judah was finally showing some signs of improvement. By Friday July 4th, Judah was beginning to look like himself again, and he was cleared to head back home. While he may not yet be back to 100%, he is getting closer every day.

 

Although we know that getting sick is unavoidable, we do what we can to limit Judah’s exposure as even something as simple as a cold will land him in the ICU. We worry what will happen when Judah gets a flu or something worse, but we continue to take every day as it comes, and live life to the fullest we can without trying to shelter Judah too much. We do appreciate all of your love and support, your kind wishes and good thoughts, and we return it with all of our love.

J-N-J

6 thoughts on “Sunday 7/6 – Out and About, and back to the hospital

  1. Hang in there. We also had a disappointing experience this week, but I really believe it is going to be the best thing in the long run. Judah is in great hands – his parents and his doctors – and they all love him, just as we all do. Be strong.
    Love,
    Mary

  2. It must be very difficult to keep Judah sheltered all the time. It looks like he is really enjoying beig outside, meet the world, new people, make even more friends. With his wondeful personality no wonder everyone wants to become his friend.
    G-d willing, with the help of his doctors and parents eventually his immune system will be much stronger.
    Best wishes, love

  3. i I am so sorry to learn of Judah’s stint in the ICU during the past week. I do hope he is able to stay off the vent and oxygen now. As much as he likes all his extra curricular activities, maybe it would be best to limit some of them until his immune system is a little stronger.
    Love and kisses to Judah!

  4. Sorry to hear of the little guy being sick. We hope he is all well now. Looking forward to the next update and a good progress report!

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