We are home!  We arrived home around 9:30 last night, and we’ve enjoyed our first full day without monitors beeping, and nurses nursing.  It has been wonderful, and at the same time a little stressful.  Now, we have to rely on our judgement alone on what is too much for her.  What time to do anything.  Whether she needs pain meds or not, etc.  

She got up from sitting on the couch mid-morning, took three steps, and dropped suddenly to her knees.  Hard.  

“Huh, that’s funny.  My legs won’t work,” she puzzled.

While I was still digesting this turn of events, she got herself back up, attempted another step, and fell right back down again.  She quickly struggled to her knees, preparing to stand again.

“No!  Stop!” I waved both hands at her as I ran over.  “Stay down there.”

Together we assessed the possible causes, and eventually I helped her slowly to her feet and back to the couch.  

She’s so unpredictable.  She’ll be full of energetic conversation and laughter one minute, and dropping off to sleep the next minute in the middle of a word.  Parenting and nursing this situation is difficult, so pray for extra wisdom for us.

She is not fully healed.  They have dried up her lymphatic system which runs on fats, so she has to continue her 10 grams of fat per day diet for the next few weeks while it continues to build stronger scabs and scars.  Then we can slowly reintroduce fats and see if the scars hold and that she doesn’t spring a leak again.

She has lost 17 pounds so far, and every day she loses more.  I can count her ribs.  I have to keep telling myself this is temporary and necessary and ultimately for her good, just to get MYSELF through this.  She’s being a really good sport about starving all the time, and her self-control is phenomenal.  Definitely way better than mine.  She points out that the alternative is going back to a chest tube.  I guess I’ve just never had the proper motivation for my own self-control! 😜

After we know her vessels are holding, then we need to work on strengthening her lungs, which have taken a big hit in all this.  They are showing significant signs of deterioration from lack of vigorous use.  She currently does deep breathing exercises throughout the day, and she is doing as much body movement exercise as she can tolerate.  But as I’ve already described, we never know for sure what she can tolerate until she suddenly cannot tolerate it.

But.

We are home!  And not currently leaking that we know of!  Two more links in my own Merry Chain.