But on December 2, our holiday season took an unexpected turn. After having a cough for a couple of days, Grace started really struggling to breathe. A quick trip to the doctor’s office meant an ambulance ride to Springfield for our beautiful Grace. Despite Grace’s genetic illness, she has been very healthy over the past eight years, and she’s only landed at St. John’s Hospital in Springfield twice. The first time was more than two years ago and for less than 24 hours. The second was earlier this fall, for about 36 hours. Both were respiratory related, but since Grace has been healthy, she was able to recover quickly.
But our Grace is a fighter, and wasn’t ready to leave us just yet. During our two and a half-week hospital stay, we learned that Grace has episodes of central apnea, where her brain basically forgets to breathe. In most instances, she recovers on her own, or is able to be rousted from the episode by stimulation or a change in position. We also learned that it was no longer an option to feed Grace orally because her risk of aspiration was too great. We came home on an NG feeding tube (through her nose), with hopes of getting a G tube when she is fully recovered from her respiratory issues. It was pretty scary for me at first, but you can truly do anything you put your mind to, and her feedings have gone really well. I only tipped the pole over one time, and the feeding bag was closed so it didn’t even spill all over the floor.
With the help of the palliative care team at St. John’s, we were able to bring Grace home mid-December, not really knowing what the first few days would hold. Fortunately, Grace thrived at home, and we had an amazing Christmas and New Year’s with our family and friends. It was an incredibly special two weeks.
“She is clothed with strength and dignity and she laughs without fear of the future.” Proverbs 31:25