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A progress report

Callie is thrilled to be home, and although she still has a long way to go, we began to feel optimistic today that she would be able to recover from this bout with pneumonia.

She is still too weak to breathe on her own for very long. She depends on her Bipap machine for breathing support. She also could not survive without the machine that helps her cough.

callie-gracieToday while resting in bed her cat, Gracie, jumped into her bed to curl up beside her. Callie was glad to have the company.

We expect it will take a few weeks for Callie to return to her full strength, but things seem to be going in the right direction.

Once again, we are grateful for the love, support and prayers that have been shared with Callie and our family during this illness.

Another night in PICU

Callie is still in the Pediatric Intensive Care Unit at Brenner Children’s Hospital. The IV antibiotics seem to be helping, although her anxiety has been making it difficult for her to rest. The good news is that she seems to be overall better today than she was yesterday.

Breathing is still difficult. Throughout the day she has needed her Bipap machine, along with supplemental oxygen. Her temperature climbed to around 103 degrees F during the night but has not been higher than 101 today.

She’ll be in intensive care for at least one more night. We will post again tomorrow to let everybody know how she’s doing. We appreciate the prayers and well wishes for Callie and our family.

In the hospital

Callie started feeling bad Tuesday and has continued to get worse each day despite antibiotics, extra therapy and rest.

We’d done everything we could to help her recover at home and she still was getting worse. So today we brought her to Brenner Children’s Hospital in Winston-Salem where a chest X-ray confirmed that she has pneumonia.

She will be staying in the hospital tonight and has been getting IV antibiotics. We expect to see some improvement within 24 hours. We also hope that she is able to rest, which, along with medicine, is essential to her recovery.

We’ll post another update by tomorrow night.

A difficult weekend

Callie has had a rough weekend. What started as extreme fatigue late last week seems to have turned into aspiration pneumonia.

We’re thankful to have good guidance from Callie’s doctors and nurses, access to medicine and medical equipment and the support of friends and family. As usual, our goal is to help Callie rest and recover at home.

We’ll post more updates as things change.

Good news

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.

A health update, part 2

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.

A health update

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's birthday cake

Callie with her birthday cake. (And Peter singing in her ear.)

She went to the doctor Tuesday afternoon and got an antibiotic to fight the beginnings of a sinus infection.

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.

Our birthday girl

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.

callie

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!

The new year

Callie is doing great. For the first time, she was really excited about Christmas this year. On Christmas Eve as we put her in bed, her head was shaking back and forth non-stop. That’s one of the main ways she shows her excitement.

Callie lives a good life. She talks almost all the time at home. She’s a little more shy in public, but not much.

She’s become a pro with her power wheelchair. She can maneuver it through tight aisles at the grocery store. The chair has a horn, and she hasn’t quite learned good horn etiquette. She and her 5-year-old brother Peter are quick to honk the horn at people who stop in the aisles.

We stay busy just taking care of Callie’s daily needs and the needs of her three older brothers. So we do not have much time to think about the future.

But the new year that begins tomorrow naturally brings thoughts about the next 12 months. Callie is so vulnerable. There’s always the possibility that she will catch a cold or a virus that she can’t get over. Will this be the year?

Those aren’t thoughts that we dwell on. We’ve gotten pretty good at thinking about only the present. In the present, all members of our family are here with us. We have food to eat and a safe place to live. Nothing else really matters that much.

Our thoughts and prayers go out to those whose lives are incomplete in this new year.

We also cannot begin to thank the people who have shared so much to help our family over the past year.

Happy new year.

Sick, tired, and improving

On Monday we noticed Callie’s heart rate was high. She started running a slight fever so we took her to the doctor. He noticed the beginnings of an ear infection and prescribed antibiotics.

That was Monday. On Tuesday night Callie’s fever spiked to 103.0 and her heart rate was twice as fast as usual. On Wednesday the antibiotic started working and her symptoms started to improve.

When Callie is not sick it’s easy to forget about SMA a little. But the “beginnings of an ear infection” have kept her home for almost a week. She’s been pale, tired and even says she doesn’t feel like going to preschool. Somehow we’re always surprised that she has so little reserve.

But she is doing better. She is resting, has a good appetite and, of course, is one happy little girl.