Proud Parents

I was able to get to the hospital this morning early enough to participate in rounds. I guess the main things discussed were his chest x-ray and heart arrhythmia (called "junctional rhythm"). His left lung looks clear and healthy; his right lung, the same side as his diaphragm plication, looks cloudy and collapsed. To address the struggling lung, they have prescribed HIT (hyperinflation therapy helps inflate the lungs) and diuretics. (We are no stranger to diuretics or lung collapse/effusions! Ayden went home on three different diuretics after the Glenn!) They have also requested for one of the surgeon's nurses to come look at the chest tube that enters the right cavity. It is possible that the chest tube needs a little adjusting to properly drain that side; if so, that's a fairly easy solution (though painful one for Ayden).

Bryan, a nurse, and I held Ayden down while the respiratory therapist performed HIT. It was an unpleasant experience for everyone, though probably a productive one for Ayden. After Ayden received positive oxygen pressure, he gave the RT several good coughs that resulted in breaking up the gunk in his lungs. The RT then was able to remove the fluid through deep nasal suction. There were several "Oh, man" outbursts from Ayden during the process. Once she was done, she told him he was finished, and he pitifully responded, "Done!" accompanied by clapping and sign language for "all done." It was a precious response after something so traumatic.

They have had a little bit of difficulty managing Ayden's pain overnight and throughout today. He hasn't been as anxious to sit up today as he was yesterday, though he has done so to drink, to interact, and, very seldom, to dance.

The music therapist came in to entertain and cheer Ayden. He was a little loopy at the time, and he isn't all that cheerful in general. He was definitely trying to pay attention, and I know that he will find that type of therapy more interesting as he starts to feel better. The therapist said she would try to come three times a week, and she promised to learn some of his favorite songs on the guitar. She sang a Sesame Street book to him, and I had never seen anyone sing a book before. I'm in trouble if he expects that from me!

This evening they are supposed to try to turn off Ayden's pacemaker for a few hours. We are hopeful that his heart can find the appropriate rhythms and waves and conduction and... We are just praying for a good response from his heart!

As with any day in the hospital, there isn't much time for rest. People bother him all of the time, but I think he's handling it all fairly well considering he had his chest opened and his bloodflow rewired 48 hours ago. He continues to drink fluid well, and he is taking his medications like a champ. He even took potassium mixed with chocolate milk without complaint, and potassium is, by far, one of the grossest medications. We are so proud of Ayden. He is certainly doing his part to get healthy. His body just needs to cooperate!

In the waiting room, the grandparents have been entertaining Brogan. He too has experienced a lot of change over the past few days, and he has handled everything beautifully. We are also very proud of Brogan!

Please celebrate with us JUDE'S DISCHARGE from the hospital! PRAISE THE LORD! ONLY TEN DAYS!

To see pictures of a healthy Ayden interacting with his Gran, Grandad, & Daddy a few weeks ago, click below.