Sunday, May 24th - Update

Overall a pretty good day yesterday. She had three walks, two on the passing air and one on the high flow. I was able to go hang out with her for a few hours in the afternoon. Friday night she was only rested on the ventilator for 4 hours and seemed pretty tired when I got there. She had a few episodes after respiratory therapy where her oxygenation dropped and she wasn’t able to bring it back up. So they had to switch her back to the high flow around 4 pm. We also noticed that she became very confused and disoriented after waking up from naps. 

Her white blood cell count dropped significantly this week also but the team feels like this is attributed to the anti rejection medication she is on. 

Today they had her rest on the ventilator for 4 hours (2-6 am) and is back on the passing air trach. She is also practicing using the speaking valve and yesterday I got to hear her raspy voice for the first time in 9 weeks. I cried it was so amazing. It’s super soft and her throat hurts but should improve once her vocal chords get used to the movement again. 

Back pain continues to be a big issue that they are trying to manage. She also has severe muscle tremors/spasms pretty constantly which makes using her phone or writing difficult. 

X-ray yesterday shows no change in either lung. Left still has fluid built up around it and the right has what they think is pneumonia in the middle area. She is on a high dose antibiotic to treat. Legs and her left are are also significantly swollen. I tried to massage out what I could but they are concerned about the fluid buildup. Walking and diuretics should help. The team was all really happy with her progress this week despite the steps back. She is getting strongly slowly. Her first walk went well this morning.