Emily update #5

Update on Tobias

This has definitely been a hard week. He has been having a hard time with his oxygen. They gave him a blood transfusion on friday to help him have enough blood to carry his oxygen throughout his body. Without enough blood you can’t oxygenate the body very well. That did help a little bit. Monday he had his weekly eye exam and it had rapidly progressed from stage 1 last week to stage 3 this week. If it was to go untreated it could cause permanent blindness. So yesterday another eye doctor came to take a second look and treat his eyes. His normal doctor didn’t want him in the middle of being messed with his eyes to have respiratory problems so they decided to re-intubate him to be on the safe side. I was so worried about him and didn’t want to leave his side while they intubated him. Just a word of advice that is not something that you want to see happen to your child. We stepped out after that for his eye exam because we couldn’t watch him go through that. They decided that he needed to be treated so they did injects in both of his eyes to stop the blood vessels from progressing worse. Once he is closer to going home and his retina is bigger they will do laser treatment on his eyes so there is no chance of it reattaching and getting bad again. That was a lot for him to go through and he has been struggling with his oxygen ever since. They are trying to figure out what is causing it. He had bloodwork done to see if there was an infection and that came back negative. They are trying nitric right now to see if it is pulmonary hypertension. The nitric was an easy way to see if the problem would go away instead of having him undergo an echo to physically see. We are trying not to mess with him as much as possible and let him relax. Right now it’s a waiting game to see if this will work or if he needs to go back to the jet ventilator. They are keeping him sedated right now to keep him comfortable.

-Emily and Nolan