Callie is getting better. She has been stronger for the past few days. She has been awake more and was able to go to school for a few hours at the end of last week. We hope she’ll regain her full strength this week.
We’re still doing breathing treatments, but she finished her antibiotics today. Aspiration has been less of a problem the past few days. Her doctor saw her a few days ago and said her lungs sounded a lot better.
We’re grateful and relieved.
Callie is still sick, but we’re hopeful she is getting better. Today, her pediatrician said her lungs sounded much better than they sounded Thursday.
We are grateful for this good news because there have been times in each of the past few days when we thought Callie might not fully recover from this sickness.
On Thursday night she suddenly was unable to breathe properly. With help from her doctor, nurses, bi-pap machine and medicine, she got through that frightening hour. Both her pediatrician and her pulmonologist (who was in touch with our pediatrician) thought Callie possibly had a mucus plug blocking the flow of air in one of her lungs. We also know that fatigue was a big factor.
Since Thursday Callie has slept a lot. When she’s not asleep, we often are using cough assist, chest physiotherapy, breathing treatments, oxygen or medicine to control her symptoms. These therapies help Callie rest. Rest is key to her recovery.
Callie continues to aspirate on food and drink. Since she’s on two antibiotics, she should be safe from infections that can result from aspiration. Over the next week we hope she will regain enough strength to keep from aspirating as she prepares to go off her antibiotics.
Right now the only way to prevent aspiration is to stop feeding Callie orally. But telling Callie she can’t eat when she says she’s hungry would detract from her quality of life.
We’ll post another update in a week or so. We are thankful for the prayers, thoughts, comments and e-mails, and the invaluable support from Callie’s entire health care team.
Thanks to everyone for all the birthday and get-well wishes for Callie.
She had a fun birthday on Tuesday, but since then she has been feeling worse.
Callie with her birthday cake. (And Peter singing in her ear.)
When Callie gets sick, she’s a lot weaker and more prone to aspiration, which is when food, drink or secretions go into the lungs instead of the stomach. It’s possible that Callie aspirated Wednesday because by that evening she had gotten really sick with fever and cough.
Today, her doctor added a stronger antibiotic, steroids and breathing treatments.
We hope this new mix of medicine, along with fluids through her G-tube, will be what Callie needs to shake off this sickness. In the meantime, she is resting at home.
We will post another update in a few days.
Today is Callie’s fourth birthday. She’s been talking about this day for months.
Callie wanted pink cupcakes to share with her classmates. Those are ready. Callie’s nurse Marsha gave Callie some restaurant gift cards so we could go to one of Callie’s favorite restaurants. Most of her presents are wrapped. One of the teachers at her preschool made a snowman cake.
But Callie has been getting weaker over the past few days, and yesterday (Monday) she started coughing a lot, and she has a runny nose.
This always seems so sudden and unexpected to us. We’re hoping this is just a minor cold that we can fight off over the next few days. But we know, too, that Callie is very weak and vulnerable.
Today is her birthday. Over the past four years Callie has taught us how to adapt our plans to what’s really important, and that’s what we’ll do today. Instead of going to school we’ll see about dropping by just for cupcakes. We will enjoy take out if Callie is too tired to go out.
We’ll have a good day, but we’re also worried. So we ask those who are inclined to send up a prayer for our birthday girl.
Happy birthday, Callie!