Last night was horrible. For anyone following us on twitter you would know that I was up most of the night watching Gavin's struggle to breath. It started with an increased need for O2 and the morphed into a temp of over 106. By that time we had to bring in the high flow nasal cannula and he was on 9 liters at 100% O2. HIs sats still were not great.
This morning he continued to worsen and it was later found by xray that both of his lungs are 50% collapsed, explaining the need to so much oxygen. From eh xray it doesn't look like any type of pneumonia but rather sludge that builds due to Gavin being so weak he cannot take deep breaths and therefore the tiny vessels begin to collapse.
Our doctor this morning had a talk with us and discussed all the options -- some of the talk was grim but we are still hanging on to hope. We made the decision to move him to bipap and put some pressure back into his lungs. So far he is doing great on the bipap. He is sating 100 and his heart rate is down and he just looks a lot more comfortable.
We took him off his TPN and put him on normal fluids at a low rate, thinking that if there is an infection in the line we will stop putting pushing so much fluid through the infected line. We also are running both Albumin and lasix to try to push some of the enormous amount of fluid off his body and out of his lungs. We added an additional antibiotics just in case we are missing something.
This afternoon I'm feeling a little better. His temp has come down, his heart rate is down and he is resting comfortably and not struggling to breath. We will be taking him home. Gavin wants to go home. In fact the only thing that calmed him down after putting the bipap on his face was me softly telling him that we could go home and play with Madi and play with his choo choos.
He softly whispered "ok."