Callie’s surgery today went well. She is now in pediatric intensive care recovering from the procedures. She is breathing on her own, with help from her bipap machine as needed. She’ll spend one night in ICU, then will go back to a regular hospital room tomorrow if things go as planned.

I carried Callie into the operating room and held her until she fell asleep. After the anesthesiologist released the medicine through her IV, Callie said, “Night night,” and went to sleep.

The surgery took longer than we expected, mainly because the surgeon discovered inflammation in Callie’s lower esophagus that was the result of reflux. He said it was really good that we opted for the Nissen procedure, which is designed to limit reflux, along with the G-tube, which was the primary reason for today’s surgery.

Her G-tube is in place and already has been used to give her pain medicine. Christy and I will post more updates as things change.

Callie has had a great week. She is breathing and sleeping well, and she is happy. Callie remains in the hospital because she needs more nutrition than she can take in by mouth. Right now she’s getting nutrition through the PICC line she got earlier this week.

Callie is able to eat some by mouth, but she must take very small bites and can eat for only about 10 minutes before her swallowing muscles grow too tired. After that she is at a much higher risk for aspiration which, as we learned Sunday, can be very dangerous. Callie has not had anything to drink since Sunday except while in therapy.

With those kinds of limits on oral intake, Callie cannot sustain herself nutritionally. We hope that as she continues to recover from this recent illness her strength will increase and she will again be able to eat and drink as much as she needs.

But the reality of spinal muscular atrophy is that Callie will lose muscular abilities as time goes on. Chances are this will not be the only time Callie needs supplemental nutrition, even if she doesn’t need it on a regular basis.

So it has become clear to us that Callie needs a gastronomy tube (G-tube).  She is scheduled to have surgery this coming Thursday, March 17. While in surgery, Callie is also scheduled to have a procedure called Nissen fundoplication, which will help keep reflux under control. (Some tests last week showed that reflux would be a problem if Callie were to receive nutrients through a G-tube.)

We haven’t chosen this path lightly, and neither have Callie’s doctors and therapists. Christy and I are nervous about Callie undergoing and having to recover from surgery. But we also believe that after she recovers, Callie will be better able to maintain her strength and recover from illnesses since they won’t be exacerbated by a lack of nutrition. We believe she will be able to spend less effort on surviving and more on living.

Callie has enjoyed the cards, drawings, stickers, books and toys she has received in the mail this week. Thanks for your continued kindness, support and prayers.

Callie is feeling much better today, but yesterday’s sudden and acute sickness has changed our expectations and our plan of care for Callie.

This afternoon she got a PICC (peripherally inserted central catheter) placed in her right arm. It will allow her to receive medicine and nutrients without the instability of a traditional IV line.

With the PICC in place she should grow stronger. Within a couple of weeks she should be strong enough to get a gastric tube for nutrition.

After the surgery to place the feeding tube, we can start thinking about getting her home. So Callie will be in the hospital for a while.

It’s possible she may seldom need the feeding tube. But the past 10 days have made it clear that there will be times when she needs it. And we believe that having a way to optimize Callie’s nutrition will help her enjoy life more thoroughly.

Unless things change this likely will be our last blog post for at least a few days. Instead of posting each day we’ll now be updating the blog as things change for Callie.

We have no way to thank you all for the support we’re receiving through this blog and in so many other ways. For those who have asked about Callie’s address, you can write to Callie Golden, c/o Duke University Hospital, 2301 Erwin Road, Durham, NC 27710.

After getting IV fluids through the night, Callie was very hungry and excited about eating today. But at lunch some food or drink apparently went down the wrong way and entered her lungs. By mid-afternoon she was very sick: a fast-climbing temperature, elevated heart and respiration rates, lowered blood-oxygen levels.

It was a frightening hour, during which a chest X-ray confirmed that something was in her lungs, leading to an unofficial diagnosis of aspiration pneumonia. (We don’t yet have lab results.) She started IV antibiotics right away, which along with Tylenol, seemed to calm her symptoms by bedtime.

We don’t know how what happened today will affect her overall health. We hope she will continue responding to antibiotics and respiratory therapy, and that tomorrow she will resume her trend toward better health. We also don’t know what this means for her quality of life. Is it no longer safe for her to eat and drink?

Lots of questions. We hope to find some answers tomorrow.

When we posted last night we felt certain Callie would be home within 24 hours. But a half hour after publishing that post, a nursing assistant stopped by to weigh Callie and everything changed.

For the second day in a row Callie had lost a significant amount of weight. She also had not had a wet diaper all day. The issue of her nutrition had gone from something to be dealt with later to her primary health issue.

So it was not a surprise this morning when the doctors on duty said Callie should not leave the hospital. We were discouraged at first, but there was no way to deny that Callie needed some kind of intervention to prevent becoming dehydrated.

We’re still not sure what form that intervention will take in the long term, but a very skilled nurse from the Pediatric Intensive Care Unit succeeded in starting an IV in Callie’s arm this afternoon, so she is getting fluids and other nutrients right now as she sleeps.

This short-term solution should get her out of danger while giving us some time to determine how to best address her long-term nutritional needs.

Callie’s lungs – her original reason for being admitted into the hospital – continue to sound better each day. Her new bipap machine is allowing for better breathing at night. Overall she’s in much better shape than she was a week ago.

We’ll continue to post updates as we learn more and seek to make the best decisions for Callie.

Today Callie seems more like her usual self than she has in more than a week, and we are very encouraged.

She’s had a better appetite and more energy, and she has rested well, both last night and during her afternoon nap today.

She still has more secretions than she can handle, but consistent respiratory therapy keeps her oxygen saturation at a safe level during the day, and her bipap machine does the same while she’s asleep.

We’ve started the process of getting Callie a bipap machine for home. The hospital staff likely will switch Callie to a home model while she’s in the hospital so we can learn how to use it.

We don’t know when Callie will be able to go home, but today we started to feel that taking her home is once again a possibility. We’re aiming for early next week.

Nutrition is still a concern. There are many days that Callie doesn’t take in enough nutrition to maintain her weight, even when she’s well.

So the idea of a feeding tube – something that has been on our minds for about six months – has surfaced again. Callie had two tests this morning to determine what kind of tube would work best.

But if Callie continues to eat and drink as she did today, we will not need a feeding tube or any other kind of intravenous nutrition (PICC line or central line) during this admission. Instead, we could wait until she’s well and stronger before undergoing the surgical procedure required for a feeding tube. Then we’d have the tube in place so that her next illness would not be exacerbated by a lack of nutrition.

We hope to learn (and post) more about that tomorrow.

Family and friends from near and far continue to be a remarkable source of strength for our family. Thank you for your help, your kind words and your prayers.

The love and generosity of an entire town overwhelmed our family last night as First Baptist in Ware Shoals hosted a Love Offering Concert for Callie.

Since we learned Callie has SMA, First Baptist members have responded with notes of encouragement, prayers and donations. But a group of church members wanted to do more.

So they formed a committee which planned, publicized and executed Sunday’s concert. We simply showed up and joined about 400 other people in the audience who had come from several local churches and from towns throughout the Upstate of South Carolina.

I arrived a little apprehensive about putting Callie’s weaknesses in the spotlight and dwelling on her illness in a public setting.

But the words and music that followed did not focus on grief and sadness. Instead, they celebrated Callie’s life and her purpose, the strength of a community and the fact that we are not alone as we face the challenges of Callie’s journey with SMA.

During his introduction, newspaper publisher, church member and family friend Dan Branyon put the evening into context by pointing out Callie’s ties to First Baptist, which go back at least five generations.

Several of Callie’s aunts, uncles, a great-aunt and her grandfather were among the array of musicians who presented a poignant selection of traditional and inspirational music, while downstairs volunteers prepared a reception complete with an Elmo cake, which Callie loved.

A video (which we’ll post on the site soon) gave an overview of Callie’s journey so far, and Christy talked briefly about SMA and Callie. Pastors Marcus Bishop, Dan Compton and Leon Jones spoke. And members of the congregation responded with such generosity that we still are stunned and humbled.