one week home...

Ajay has been ill this first week home and continues to vomit several times a day. ( all docs say its because of his heart, lungs and compromised airway and GERD ) He came down with an upper respiratory cold within 2 days, which meant more doc visits and increased medications and respiratory distress during the night. He continues to have difficulty eating, and actually doesn't have any true interest in food. We eat as a family and he looks very much like we are wasting his time to try foods at all. But of course we encourage all meals and snacks as a way to hopefully engage him with something. His tube feedings have been increased due to the inability to eat on his own. I am hopeful that he will show signs of wanting to eat soon. I was hoping for the removal of the tube feeds, but I feel that he won't be rid of it anytime soon. With the frequent vomiting, we need to make sure he is hydrated. I learned at his pulmonary appt on Tuesday that Ajay also has an enlarged heart 2-3x normal size, which is boot shaped, and compressing on his airway. No one ever mentioned that while at the hospital.... Its amazing to see that this child can still breathe at all! With all the other breathing complications over the last 3 months, I wonder how he will continue to breathe as if nothing is wrong. He has the bronchial and tracheal malaysia, an enlarged heart compressing on his airway as well as the right lung is still collapsed. We are working with all therapies, and Ajay isn't impressed by their tactics or games. He's quite grumpy but when he is happy, he is truly happy. I think he is just tired of everyone coming and going already, even though these home therapies have just started their routine.  Ajay will continue to heal, but as always, will be slow and steady....in Ajay"s time.