Tuesday 2/5

Judah has left the hospital and returned to The Children’s Home, where the nursing staff had missed him tremendously and were amazed how much he had grown in just two weeks. Last week on Thursday, the doctors were able to get Judah in a day early for his Cath appointment. They kept him in the hospital over the weekend, and as of Monday he was sent back to the Children’s Home, for now. Overall the Cath went well, once the doctors got into his heart they found that little J’s pulmonary artery is not as narrow as they had first thought, and although smaller than normal seems to be growing as he grows. They also noted that his pulmonary hypertension (abnormally high blood pressure in the arteries of the lungs) was not as bad as originally thought, but there still are some signs of hypertension, which is partly causing the right side of his heart to work harder than the left.

While the doctors were performing the cath, they decided to do a full diagnostic of his heart, as the cath is the best way to really see the heart from the inside out. While in there, they noticed a couple of troubling issues, primarily a leak in the conduit that was placed in his heart during the first open heart surgery when he was just 9 days old, as well as problems with the valve at the end of that conduit, and finally the hole in between the top two chambers of his heart (the ASD – Atrial Septal Defect) has still not closed up properly, and will probably need to be patched in order to stop some shunting of blood. What this means is that sooner rather than later, Judah will probably need another open heart surgery to fix these issues, and these issues are probably the reason why he continues to have heart rate and breathing issues. Judah additionally continues to have an issue with his heart rhythm, and this as well as all of the other issues mentioned means that during their weekly group consult, all of the departments (cardiology, surgery, critical care, etc) will meet to discuss Judah’s case and determine whether surgery or another option is best, and how soon it will be needed. Though we will not know more details until after this departmental meeting later this week, based on the general tone and information we have been given, we feel Judah will probably be back in for surgery soon.

While the teams wait to meet, Judah has gone back to the Children’s Home to enjoy a slightly more relaxed environment than the Hospital’s CICU. Over the last several days, Judah has been in an extremely happy mood, smiling and laughing all day long. As he continues to grow, and soon approaches his 5 month birthday, he is really coming out of his shell and showing off his happy and smiley personality. He loves to play with his toys, kick his feet, roll from side to side on his own, and greet everyone who comes near him with a great big smile. He has even begun mouthing the word “hi” to people when they say hello! Judah’s feeds have been adjusted again as he has been gaining weight very well, and is now over 12.5lbs! He looks absolutely adorable with his giant cheeks and Buddha belly.

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If surgery is the plan of action for Judah, then it will delay our hopes of bringing him home, but that will give us more time to work with our insurance company and medical assistance to get the nursing care he will need. For now we don’t know what Judah’s future holds over the next few weeks, but as always we place our trust in his medical team, and we hope to know what their plan is and what is in store for little J by early next week. For now, please continue to keep Judah and mommy and daddy in your hearts and prayers, and as soon as we have more info, we will share it.

all our love
J-N-J

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