Just a quick post before I turn in for the night…
Phoebe and I had a great day together, she was awake most of the night and she kept me on my toes playing ball, putting her jewelry on, coloring, and watching Backyardiagans. She spoke so much more last night than I have heard her yet. It was awesome. I didn’t even mind that I only got 1 hour of sleep, we were having so much fun!
When morning came Phoebe decided it was time to get some shut eye, and there I was..still awake with the nurse and the day just getting started. Such is life with Phoebe the nocturnal. Nathan came up for Phoebe duty tonight and we had dinner together before I went home. Nathan’s Dad is here to help out this week which is a blessing for all of us.
Her PICC line was removed today, so she is back to just having her port which is nice. Just 2 weeks ago she had lines in both hands and feet and a central veinous line in her groin. I am so thankful for where we find ourselves today! Our goals for going home are: successful ng tube feedings, breathing well and oxygenating well, and the biggie; sodium. Right now she is having a lot of sodium fluctuation which she can’t do if we are going to take her home. She needs to be on a predictable 12 hour schedule without swinging between high and low sodiums. Please pray for all of the above.
Thanks ya’ll for continuing to stand with us through it all.