Smiles are twice as precious when they come from a child in ICU and his mom who has been by his side almost around the clock for 12 days. Smiles were nowhere to be found a couple of days ago. On Wednesday, Gideon was moved up to the regular floor from ICU after the second cath procedure that was performed on Tuesday. They wanted to wean him off the heart medication, milrinone which helps the function of the heart, just to see how he handled things on his own again. That didn't work out too well.
Deanne was with him overnight Wednesday and they both had a sleepless night. All of the signs of struggle were returning throughout the day on Thursday - sweating, pale bluish coloring, and his EKG was showing different patterns. Even the nurses were concerned. The cardiologist on the floor was trying to tell us the EKG monitors were just reading the heart differently and there is nothing to worry about. We felt totally uncomfortable with that answer. Something was not right and had changed, but he didn't pay attention to the parental instincts. He consulted with the cardiologists who were more familiar with Gideon's case and, Friday morning, the decision was made to get him back to ICU and back on milrinone. We will request that the other cardiologist who gave us the bogus answer is not involved at all in Gideon's future care even if he is the one on the floor when he goes back.
The photo above was taken Saturday afternoon after he was back on the "wonder drug" for about 30 hours. It was also after Deanne and I were able to get out and do things normal people do for a few hours. Hannah offered to babysit Gideon in the hospital to give us a chance for a date. That was so thoughtful of her. We went to lunch at the Garden restaurant at the top of the Joseph Smith building, walked through the City Creek mall and bought Gideon the new clothes in the picture, bought a few books at Deseret Book then stopped at Village Inn for a banana cream pie. It was 3 hours of normal life after just seeing each other for about an hour per day since entering the hospital January 29th.
The plan now is for the valve repair and pulmonary artery restriction surgery to take place on Wednesday and a 4 day recovery. Another week of a crazy schedule, but Gideon is alive and is getting great care. We are blessed to have him no matter how long that may be.