Now, mind you, though it is wonderful to be home, it is NO picnic. We have to provide aggressive respiratory therapy every 4 hours around the clock. Add in frequent bathroom breaks (we're still pushing fluids), and that means we rarely get an hour break. That was particularly hard last night, I didn't get more than 2 hours of sleep at a time; I didn't officially 'get up' today, til 3pm!
Friday night was rather 'memorable'. Sumana was experiencing a lot more pain and discomfort when she was 'cupped' (whacked on with a respiratory mask). So, I offered to stay with her til after her midnight regime. Then, I planned to go up to the RMH and sleep on an air mattress. But when midnight came, our nurse got really busy and didn't do the cupping. By one a.m. I went to ask her about it, and a resident told me it looked like we would be moving 'to the floor' soon because they had several new patients coming in.
Long story, short: We didn't move til 3:30ish and by the time we got settled in and ready to sleep, the orthopedic resident came in to make sure she was okay and THEN the x-ray tech showed up. UGH! We didn't get to sleep again til 5:30!! Dr. Sanders came in at 8ish and said he thought we could go home. I was a little uneasy because her PICU doctor hadn't seen her chest x-ray yet. Dr. Van der Jagt was more than happy to look at her x-ray with me. We saw definite improvement, but still lots of fluid hanging out in her chest cavity/lungs. Dr. Van der Jagt felt it was okay for us to go home as long as we maintained a consistent regime of respiratory therapy. He was so pleased, that he even left the PICU to go see Sumana and give his good wished to 'one of his favorite patients'. (she makes an impression on everyone, doesn't she??)
Today, Sumana walked out to the deck several times. Then, this afternoon she wanted to go out to her sandbox!! She walked with her walker all the way out to the sandbox and played for over a half hour. By the time she got back to the couch, she had been up and around for a whole hour! What a trooper!
Thank you, again, for your prayers and support. Please continue to pray for Sumana's healing, especially her lung situation. We're hoping to hang in with 'the plan' til her appointment on Tuesday. Then, hopefully, we can drop the nighttime therapy. Also, I'd like to ask you to pray for my health, too. I usually have a hard time staying healthy when I don't get enough rest. I'm hoping to break the cycle this time, so I can be there for Sumana.