Elizabeth is still doing better than when we first got here, but seems to be up and down alot. Her oxygen requirement has been anywhere from 55% to 100% over the past couple of days. Her lungs showed in xray yesterday some actelastisis (collapesed areas), but that is expected with her not being able to move around alot. So they started the hyperinflation therapy again, where they use the bag to inflate her lungs to try and get the air sacs to open back up. Once she is moving around more that should clear up on its own. They started giving her ativan/methadone today to wean from the fentanyl and versed medications.
We think that part of the issue with her oxgen requirement being so up and down is that she needs her custom length trach back in, we have voiced that concern all weekend and today the ENT Dr agreed. But he was unavailable today to come by to make the change, so hoping he will be here first thing in the morning and we will notice a big change once that happens.
Surgery came by today and wanted to do an upper GI on her to check to see if she is refluxing and if the nissen is loosened up. But to do that test she has to be taken down stairs to radiology. We made it down the hallway today and her saturations dropped into the 80s. The Dr stopped in the hallway and she was given 2 doses of Ativan to help calm her down but it didnt work. So we turned around and came back to her room. She had to be paralyzed and sedated for a little while to give her time to recover. The test will be rescheduled once she is a little more stable. We are hoping once she gets her custom trach back in that we can transition back to her home ventilator and that will make her a little more comfortable, she will be able to sit up more and the tubing is arranged better to allow her to move her arms more.
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