Early last week, we took Callie to see her pediatric palliative care doctor so we could discuss some problems Callie has been having the past couple of weeks. Callie had become extremely fatigued, needing naps and asking to wear her bi-pap during the day. Callie’s stomach was also hurting when she ate, but she didn’t have any other symptoms, such as a fever or cough.
Visiting Hogwarts at Harry Potter World in Orlando.
Callie naturally has some days when she’s tired, especially after having a lot of activity. We’d been to Harry Potter World with my parents as a special trip, but that was back in October. And despite all the wand waving, playing in the pool, and traveling, Callie had seemed okay during the trip.
As we were telling the doctor how tired Callie had been, she and Peter were up to their usual antics — pretending, laughing, putting on plays with the owls they’d just made out of construction paper with a volunteer in the waiting room.
On previous visits to this doctor, Callie hadn’t had any of her brothers with her. She cried and was apprehensive the entire time. The doctor enjoyed seeing this side of Callie — the side we see so frequently and the reason we were there for that appointment: We don’t want to see that joy diminish.
Callie with her new cousin, Olivia, the daughter of my younger sister and her husband.
Peter and Callie told the doctor all about their new baby cousin, Olivia. Callie was thrilled the new baby was a girl, and she immediately inducted Olivia into our “Girl’s Club,” which until then consisted of Callie, me, and our girl kitty. Peter wanted me to show the doctor the picture of when Olivia, at 6 days old, reached out to touch Callie’s face. The doctor was appropriately impressed, which only widened Callie’s smile.
Eventually we started discussing the reason for our visit. The doctor thinks Callie is probably not maintaining sufficient oxygen levels because of the compression on her lungs from her worsening scoliosis. As a result, she’s building up carbon dioxide (CO2), which causes sleepiness. The stomach pain is still mysterious, but we suspect it ties into the respiratory problems as well.
We developed a plan: more cough assist and bi-pap to help Callie clear more CO2 and an adjustment to her medication to help with the pain. So far, between keeping Callie on her bi-pap essentially all day and night, and adjusting her medication, we’re seeing an improvement in her energy level, appetite, and pain. In the meantime, the doctor said she would be reaching out to other specialists to see if they have any other theories or ideas.
Callie’s continuing to live the life she enjoys and is looking forward to visiting our families for Thanksgiving. Being the youngest of four children, she’s used to sibling arguments and having to present her case for what movie to watch, where to eat or whether to play with Lalaloopsy dolls or army men.
So she’s very pleased that she managed to “call” holding Olivia first, knowing her brothers will simply have to wait their turn.