I am sorry for the late update. I have lost my Internet here on my floor of the hospital, and had a terrible time trying to get the IT dept up here...at any rate, I apologize for the delay.
Yesterday was a tough day. Ajay had trouble with his jugular line, and they had to take him to the cath lab to inject dye to insure that it was placed again properly. When they injected the dye, they found the Subclavian artery
occluded on the right side of his heart. When the blood flow was lessened, it reverted back to the path of least resistance and flowed the other direction. That being said, he was taken immediately to the operating room to have a stint placed to open up that artery.
Our little boy has had 3 surgeries in 2 weeks time. He is not yet responded any further in his lung capacity, or has shown any signs of it being inflated. All of the doctors and surgeon have tried all kinds of therapy, meds, respiratory meds and treatment,etc without any improvements. He is a very sick boy who needs continued prayers to continue to fight.
The plan for today is to meet with the pediatric physical therapy team to prevent further atrophy of his muscles, to meet with a pulmonary expert who specializes in pediatric lung diseases, and to keep him comfortable. The meds are tough on his body, keeping vital organs asleep too long is also a hardship. If we don't keep him sedated, he can be very fidgety and becomes angry. He was so angry yesterday, he pulled on his wrist restraints so hard, that the had to replace the IV and give him 2 stitches to keep it in place. Sedation is a must, but at the same time, it prevents his bowels to work, his stomach and intestines are asleep, and his breathing is shallow and slowed. Respiratory is "venting and conditioning him" with higher breathes to increase his volume 4 x a day. This is kind of like exercising his lungs to expand to help open the lungs and enable him to increase breath sounds.
It has been since his clot was removed on Friday that he has not made any progress on this lung. The doctor said that in his 17 years experience that he has NEVER had a child that didn't eventually open his/her lung...with time.