An Unexpected Visit

This year’s holiday season started out just like any other. We celebrated Thanksgiving with both our families and had a wonderful day. We made Christmas cookies with Kyle’s family. Kyle even brought our tree into the living room so we could decorate it.

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.

Kyle and I both assumed this trip to the hospital would be about the same. But we had no idea how sick our Grace really was. From the ER, she was moved to the PICU (pediatric intensive care unit) and diagnosed with RSV. At that point, she really struggled to breathe, and was placed on a bi-pap machine for a few days and later a high-flow nasal cannula.

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.

Then on Jan. 3, just over one month from her last hospital admission, Grace once again had trouble breathing and we ended up taking her back to the ER in Litchfield, where they discovered she had an infection. Since we didn’t have any oxygen at home for Grace, we opted to take her back to St. John’s where they could make her comfortable. When we arrived at St. John’s, Grace had a very high fever and was throwing up, and the doctor was concerned she was septic.  We asked them to make sure Grace was comfortable.

But our Grace is a fighter. She did great over the next few days with antibiotics and we got to bring her home once again. This time, we do have oxygen at home to keep her more comfortable. It’s been wonderful to be back home with our whole family and enjoy our time with Grace.

We want to give a special shout out to all the doctors, nurses, residents, techs and respiratory therapists at St. John’s Hospital. We loved getting to know all of you during our stay. The hospital is NEVER the place you want to be, but if you have to be at one, let me tell you, that’s the place to be. An extra-special shout out to Montgomery County’s own Aaron Golitko, who was her resident doctor the last couple of days and took extra special care of our Grace.  We are so incredibly grateful to each and every one of you, and it’s been our privilege to get to know you. We know you will keep working hard to take care of all the kiddos who end up there.

Just as it’s always been, the future is Grace’s story to write. We plan to follow her lead and let her be the guide on this Grace-Filled Journey. She’s always been so strong and such a fighter, and we are always proud of her. It’s been amazing to be back home, watching Charlotte take care of Grace, and remembering why it’s so important to cherish each and every single day making memories to last a lifetime.

“She is clothed with strength and dignity and she laughs without fear of the future.” Proverbs 31:25