ONE DAY AT A TIME

We made it out of the PICU late Friday night! Jacob slept through the whole transfer from PICU to the floor. After 12 hours of sleep he woke up on the top floor of the hospital with a stunning mountain view.

Jacob was doing great on Saturday! We made lots of changes to get him closer to his home schedule. He was up in his wheel chair most of the day, and was on oxygen nasal cannula all day long. The talk on the floor was that we were going home on Sunday...until his chest x-ray results came back. Jacob's lungs were getting close to collapsing...this has happened before, and Jacob gets very sick. We caught it in time, but it is amazing how Jacob compensates for not breathing well. The doctors and we had no clue. It surprised everybody.

With Jacob's lungs not expanding as they should, Jacob was back on the bi-pap once again. It felt like we were taking several steps in the wrong direction. Sunday, it was all about making sure Jacob's lungs stayed open. This morning, they were doing a repeat x-ray to see if it had worked, and the x-ray does look better. It is not a perfect x-ray, but it is better. Today the plan was to continue to give Jacob's lungs a chance to recover.

We are tonight not sure how long it will take Jacob to be ready to come home again. It might be another day or two if we're lucky, it might be longer. What scared me is that we had absolutely no idea Jacob was moving in the wrong direction. I realize this is exactly what has happened to Jacob many times. He looks good, but he is not, and then when his lungs have been working on overtime, they collapse and he gets acutely ill. There is one thing worse than a long hospital stay like this one. It is when we get home, but have to return once again due to Jacob getting sicker. So, we are sincerely hoping Jacob will be able to stay home when he finally makes it home. There is so much about fall we all want to enjoy with him.

Until then, one day at a time.

Love, Maria.