Getting back home

As Callie’s overall health has improved over the past couple days, her anxiety has grown worse. Ever since we arrived at the hospital on Friday, she has asked constantly when she would be able to go back home. This morning she started begging for us to take her home. We explained to her that she’s at the hospital so she can get better, and she answered, “But I have to go home. It’s the only way I’ll get better.”

We realize that 6-year-old children can be impatient and demanding, especially when they’re in uncomfortable situations. But over the years we’ve also learned to listen to what Callie’s actions, as well as her words, are saying. It became clear that her anxiety over this hospitalization had gotten to the point that it was affecting her ability to recover.

So today, we brought Callie home. She’s certainly not well yet, but she’s in high spirits and is being her usual little self. We’ll still be dealing with challenges in getting her fully well, but we’re very hopeful.

We are very grateful for the care she received at the hospital but home is simply where she belongs.

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.

Our brave cheerleader

“In my dreams, I can walk.” Those were Callie’s words to Nathan recently as he was getting her out of bed to start the day.

When kids have asked Callie why she can’t walk, she’s always said, “Because it’s the way I’m made.” That’s now been replaced with, “Because it’s the way I’m made……and I don’t like it.”

When Callie was diagnosed with SMA 5 years ago, Nathan and I were determined to do everything within our power to give her as normal a life as possible. We did for a while, but it’s gradually gotten harder to do. We knew she would one day gain the sad realization of how physically limited she is. We knew this disease would destroy her body and eventually take her life. What we didn’t know, and had come to fear in recent months, was that this disease might also destroy her spirit.

But this month, Callie told us otherwise. For her entire life, she’s watched all her brothers play soccer and flag football for a local Upward sports league. She’s always watched the cheerleaders intently and announced to us that this year, she wanted to be one. If anyone other than Callie had suggested this idea, we would’ve emphatically said no. We wouldn’t want her facing the sadness of not being able to do the things the other girls can do. We wouldn’t want her having to answer the constant questions that come from curious children — “How can you cheerlead if you can’t walk?”, “How do you take a shower?”, “How do you go up and down stairs?”, “Can you go to school?”

But Callie’s brave. She’s not like us. She’s gone to her practices and had her first game this past Saturday. She doesn’t care that she’s too weak to lift her arms in the air, much less her pom-poms, or that she can’t move her legs, or that she’s always a few motions behind the other girls.

When we got to the field Saturday, Callie looked at us and said, “I’ve been waiting for this my whole life!”

We’re back home

Callie and “Foxy,” her favorite stuffed animal, before heading home.

Thankfully, Callie had a good night and we were able to come home this afternoon. It’s a big relief since she never stopped asking for her brothers.

She is, however, not very happy about having 8 missing front teeth. She says she looks like a vampire – which isn’t entirely untrue. 🙂

Her pain has been minimal and her appetite is starting to come back. Overall, this procedure has gone as well as we could have hoped.

Thank you, everyone, for your caring concern.

Today’s surgery

We’re very happy to report that Callie’s surgery went well. She was breathing on her own not long after leaving the operating room.

After going under anesthesia, Callie got dental X-rays for the first time so that the dentist could determine exactly what Callie needed. As it turned out she had one cavity filled and a total of 9 teeth pulled, including all 8 front teeth. Callie’s jaw is very small, and her permanent teeth were trying to come in but couldn’t because it was so crowded.

The other extraction was in the back of her mouth. That tooth was so deformed that the dentist thinks something went wrong when it was developing.

After the dentist finished, Callie had an uneventful extubation, and she didn’t even need her Bi-pap. She has slept most of the afternoon and evening and remains in the pediatric intensive care unit so that her breathing can be closely monitored.

The funniest part of the day happened just before surgery. Nurses and other health care professionals routinely confirm a patient’s identity. So when the anesthesiologist asked Callie if she was “Callie Golden,” Callie shook her head and quickly said, “No.”

Our hope is that Callie can go home tomorrow. Thanks, as always, for the steady flow of prayers and well wishes.

Dental surgery tomorrow

Callie is scheduled to have her dental surgery tomorrow morning around 11 am. We’ve made some progress at home with getting her to wear her Bi-pap, but she still won’t sleep with it on. After she’s extubated, our hope is that if she’s awake enough to scream about not wanting to wear the Bi-pap mask, her oxygen levels will be good enough so that she doesn’t need it. But we plan to go in armed with books and movies to keep her occupied in case that doesn’t happen.

We will post an update about Callie’s surgery either Tuesday night or Wednesday morning.

As an aside, people are usually interested in how our boys interact with Callie. We always say that they, naturally, adapt everything they do to accommodate her. This video shows just that. Isaac and Ezra had new Star Wars lightsabers, so one afternoon, Isaac decided to get some of the action on video. That turned into him wanting to make a little movie. And you can guess who he decided to cast as the heroine.

(Note: Callie’s glasses are just for play. Isaac and Peter recently got reading glasses, and when Callie had her eye exam, she cried when they told her she didn’t need any. So Nathan couldn’t help but get her a pair of fake glasses to play with.)

New problems

We’d like to thank everyone who has prayed for Callie and our family as we’ve dealt with her back pain. We were referred to a palliative care clinic at Brenner Children’s Hospital that deals with medically fragile children. Managing pain is one of their specialties, so we’ve been trying several combinations of medicines to try to find a magic solution.

A new, much bigger concern we have is that Callie needs dental surgery. For many people, this would be a basic, outpatient procedure. But with Callie’s high aspiration risk and her inability to protect her airway, this procedure will require general anesthesia, and she’ll have to be admitted to Duke Hospital.

Callie at the beach earlier this month. (Photo by Debbie Bagwell.)

This presents a few challenges for us. First of all, Callie has major anxiety related to anything medical. She loves her pulmonologist, Dr. Kravitz, yet still cries and begs to go home constantly when she has appointments. Another challenge is the fact that when she’s taken off the breathing machine after surgery, she’s likely to need her Bi-pap machine – which she hates. So we’re working with her now to try to get her to tolerate it.

We saw Dr. Kravitz last Friday, and as always, he’s already planning. As soon as he heard from the dentist that Callie needed dental work, he contacted one of the pediatric anesthesiologists and a doctor who leads the pediatric intensive care unit (PICU). Dr. Kravitz likes to plan for every worst-case scenario, then hope for the very best. Having him around makes us feel a lot more secure. He says that hopefully, she’ll wake up in recovery, need her Bi-pap minimally, or not at all, and be out of the hospital in 24 to 48 hours.

The procedure is scheduled near the end of August. For the past few weeks, and likely for a number more, we’ve felt overwhelmed, stressed and worried. We’ve seen some things worsen quickly, such as not being able to ride in a car seat more than 15 to 30 minutes without having to be repositioned due to pain and discomfort. Some things we can’t really pinpoint.

On a positive note, we had a wonderful trip to the beach a couple weeks ago. Callie loved sitting in the water, looking for sea shells and playing in the pool. It was nice to have such a good respite before the chaos of school begins.

Questioning our decisions…again

Callie has been doing well recently. She, of course, loves school and thoroughly enjoys her classmates, teachers and nurses. But one issue we’ve been dealing with the past couple of weeks is back pain. Callie has scoliosis (an “S”-shaped curve in her spine) and kyphosis (another curve in her spine that results in a “hunchback” look). This is nothing new, but it might be becoming more of a problem. Our back muscles hold our spine in place, and if the muscles weaken, the spine can’t remain straight.

As Callie continues to grow, the curves in her back will get worse. This affects her ability to sit, breathe and hold up her head. Callie’s back pain was so constant and severe that we took her to get X-rays last week. We were concerned that she may have fractured part of her spine, simply due to bone weakness all children with SMA have. Fortunately, the X-rays came back negative and we’ve been able to control her pain with medication.

Although we have chosen a palliative approach to Callie’s care, which focuses on comfort and quality of life over procedures that will prolong life, Callie’s pain was severe enough for me to start researching surgical options, particularly rod placement, for correcting the curve in Callie’s spine on the chance that it might add to her quality of life.

Although I had some hope, in the end I found what I expected: Surgery isn’t recommended for children Callie’s age. And although rods have been placed in children Callie’s age and even younger, the long-term effectiveness is still unproven. In addition, there are always risks for infections, respiratory, nutritional and orthopedic complications with this surgery. I also discovered that the non-invasive approach to scoliosis, a back brace, doesn’t prevent scoliosis – it doesn’t even delay the progression.

Surgery would put Callie through a major procedure that has no scientifically proven benefit, cause her tremendous pain and put her at risk for developing serious complications.

This disease is relentless. I wish we could save her from it, but we can’t. The past few weeks have provided yet another reminder that Callie will be healed someday, but it won’t be here.

Make-A-Wish concert

Several weeks ago, we had the privilege of attending the second annual Make-A-Wish benefit concert hosted by Elon University. The concert featured a number of a cappella groups from North Carolina and was organized by Nick Cook, a student at Elon, as well as a member of one of its a cappella groups, Vital Signs.

Nick with his sister Bella at the concert.

Nick has a 6-year-old sister, Bella, who has Down Syndrome and was diagnosed with acute lymphoblastic leukemia when she was 3 years old. (Bella’s now in remission!) Not long after her diagnosis, their family took a trip to Disney World to celebrate Bella’s life. Their family had the time of their lives at Disney, and it was Make-A-Wish who made that possible.

When we arrived at the concert hall, I expected to find about 100 attendees; instead there were about 500. I spoke very briefly about Callie’s diagnosis and what it means for our lives—how our goal is to give her the best life possible while we have her here with us. Back in 2013 Make-A-Wish sent us on an adventure to Vermont. We’ll always be grateful for the “snowy day” (as Callie’s always called it) experience. Nathan made a video of our trip that played at the Elon concert. No words can take the place of pictures.

The Elon concert raised over $4,300 for Make-A-Wish! Granting a wish costs, on average, about $6,000. We’re looking forward to meeting that goal at next year’s concert.