7.21.21 Inpatient 25

The care conference busted up right when it was supposed to begin. Somehow the coordinating fell through, but we still ended up meeting with palliative care, then a pulmonary team, then a GI team, the Medically Complex team, and our medical team all in a row. Tomorrow we will try for a care conference again. 

We are rather shaken by our meeting with pulmonary. The head of Pulmonology, whom we have met with ortho several times, said that her chest CT scan looked like she had been run over by an 18 wheeler. He said that her flattening chest was very severe. He does not mince words. Her respiratory status is worse and probably will be for at least 6-12 months or it may be her new normal. Ideally we need to use bipap as much as possible so that all of her breathing muscles, heart, and organs can get rest. This will allow her to build up reserves so that she can be as engaged and energetic as possible when she is off of bipap. She is weak and needs that support.

So we need to expect that she will need sleep/rest on bipap for these longer time periods at least for the next several months or longer. Medically Complex Care is going to work towards getting us a ventilator with a battery so that we have a safe way to go home from the hospital and to live her life out of bed. 

Happy to be back with my girl again. Ed did an amazing job the past few days on his own doing day and night shift. I am hoping that going home will be restoring for him. 

It sure is hard to leave my other loves. And so hard to be apart from Ed. I miss him.