It’s kind of nice coming to post here in the evening and not having much new information to report. It reminds me that life “out of the woods” is much more simple than the past few weeks have been. Phoebe is making small improvements each day and that helps me rest easy when I am home with the boys. I even forgot my phone in the other room a couple of times today and I NEVER do that anymore. My phone is usually glued to me just in case there is there is a change in Phoebe’s status or an emergency.
Phoebe had lots of visitors today that kept her awake and interacting which is GREAT because she is asleep now and I am thinking *maybe* I will get some sleep too. I won’t hold my breath though…I know Phoebe and her wooly ways! She will wake up for her nightly jewelry party just as soon as my breathing gets rhythmic with slumber. I have a feeling about this.
Her sodium is in a good place and will hopefully stay that way. Her oxygen has been tapered off again and she is holding her own, and…drumroll please…she ATE APPLESAUCE and DRANK WATER! Go Phoebe!! She can swallow again! Her food of choice, spaghetti, will have to wait, but she passed the swallow test and now we challenge her a little more each day in her eating and drinking.
Her sodium seems to be a in a better place today and that just leaves her lungs and of course regaining her physical strength and walking. Her lungs are still very small which only allows her to take short breaths and work harder to oxygenate her body. They shrunk down and got smooshed up while her body was so full of fluid and she was lying down in bed for so long intubated. She really needs to take deep, long breaths and get them to expand and open up, but it’s not something we can ‘make’ her do. Getting up and walking would do wonders for her lungs and this is why her physical therapy is so important, but it could take some time. Or we could see a miracle..could you pray for Phoebe to walk? And for her lungs to go back to their normal capacity? She is SO close to being approved to go home with just a few more baby steps!
Well, just as I suspected Phoebe has shaken off her sleep and is ready to visit. Jewelry party here we come!