Close to midnight last night, Callie spiked another fever. The doctors drew some lab work and started antibiotics, even though they still feel this is a virus.
Callie continued to have trouble with her oxygen level last night and we administered “blow-by” oxygen–a tube that blows oxygen near her face. That got her through the night pretty well.
However, this morning, her oxygen levels were in the 80s. She was wide awake and we had already done our little routine of chest PT, cough assist and deep suction. This time, we put oxygen directly into her nose, which helped some. Even though she was exhausted, we did a second round of deep suctioning. That seemed to do the trick because her levels came up to the low 90s and she took a nap afterward without requiring oxygen.
Her pulmonologist, an SMA expert, came to see her today and decided to start putting a bipap machine on her while she’s sleeping. A bibpap machine basically forces oxygen into the lungs and will help her breath easier, clear secretions and rest better. It’s non-invasive ventilation as opposed to intubation with a ventilator. He doesn’t think Callie will need to be on a ventilator during this admission.
The only other lingering issue is Callie’s nutrition. She hasn’t eaten well in about 4 days. Although she’s getting IV hydration, she’s not getting enough calories. That also affects her breathing since she needs energy to help herself breath. We plan to start IV nutrition tomorrow. Our hope is that the bipap will help get her through this difficult period and that she will start eating well again before needing more invasive methods of nutrition.
Thanks to Fran and Sandy for keeping our boys today so Nathan and I could be at the hospital together with Callie.
With the exception of one low-oxygen episode, Callie rested well last night. But after waking this morning her oxygen level started dropping below 90 percent, and it was not responding to the usual interventions such as cough assist and chest PT, etc. So a respiratory therapist tried deep suctioning Callie’s lungs, which helped get her oxygen saturation level back into the 90s.
The doctors think the virus has run its course but that the lingering effects — increased mucus (i.e., a common cold) — are too much for Callie to handle on her own.
We now have a plan for administering oxygen tonight if Callie needs it, and although the doctors have been in touch with her pulmonologist all weekend, he will be back at the hospital tomorrow. He may order a sleep study to see whether Callie needs more oxygen intervention, which we don’t yet have available at home.
So it seems she may be in the hospital until mid-week at least.
Since Callie’s diagnosis about a year ago we knew this kind of week was coming, but we were not prepared for it.
We are thankful for your prayers — which we see as the only explanation for Callie’s restful night last night. We also would like to thank Chris and Sandy Franks, Pam Mercer and others at our church for helping take care of Callie’s three older brothers today.
Thank you for all the prayers and concern for our family.
Callie’s doctors are confident that she has a virus and that it will run its course. She hasn’t had a fever since last night, which is definitely good news. We’re hoping that the worst has passed. However, she needs to remain in the hospital so the doctors can watch her closely and act quickly if necessary.
We’re hoping she’ll come home early next week.
In the meantime, I’m taking some of her stuffed animals and a couple of balloons to try to help keep her entertained. (Nathan informed me that the game of throwing her baby doll overboard has lost its magic.)
Again, many thanks to our friends, family and church for all of your support.
Callie was admitted to Duke University’s medical center today. Her doctors strongly suspect that she has a virus (RSV has essentially been ruled out) and children with SMA cannot tolerate common illnesses as well as other children.
Nathan and I noticed Callie had an increasing cough that began Wednesday night. This alone isn’t alarming or uncommon with SMA. Callie was seen by her primary doctor Thursday afternoon just to make sure everything was OK. All of her vital signs were normal, as was her activity level. We increased her allergy medicine because her nose was a little on the runny side.
Last night however, Callie’s health became more worrisome. Her oxygen level was low, her heart and respiratory rates were elevated and she couldn’t sleep.
We left for Duke’s ED first thing this morning after speaking with her doctors. By the time we got there, she had developed a fever as well.
She had a chest xray as well as lab work done. Callie is spending at least one night in the hospital because she’s still too unstable to come home.
We’ll know more tomorrow morning and the doctors have said they will check on her frequently during the night.
We would appreciate your prayers during this particularly difficult time for our family. This has served as a reminder of how fragile Callie’s life is. Please pray that we will not allow worry and anxiety to dominate our thoughts and actions.
Tonight, Callie has her special pillow and blanket, her stuffed fox, her “Little Elmo” and her Daddy to help take care of her.
And for now, she’s doing well.
Callie had an appointment with her pulmonologist (lung doctor) this past Friday. Every time we visit, Callie gets several lung function tests. She’s been sick 3 times since her last visit, so we were anxious to see what the tests would show.
Her lung capacity–the amount of air they can hold–is still the same, which is a big relief. Her muscle strength (the muscles that help her breathe) was slightly weaker, but not significantly so.
Overall, her doctor is very pleased with how she’s doing. He has a slight concern about her oxygen levels dropping low when she’s sick. We’ll be sending him some data from her machine that monitors her oxygen levels at night so that he can take a closer look at what’s going on.
Thanks to our friend and neighbor, Fran, who kept the boys for us while we made the trip.
This past weekend was also special because Callie turned 2 years old! We’ll be creating a photo gallery in the next month or so and will be sure to include pictures from her birthday.
Thanks for all the prayers and support so many of you give our family.
We’ll post again soon!