Life with a G-tube has been going well for Callie since she returned from the hospital a few weeks ago. Now that she’s getting more calories we have noticed a big difference in her energy level and her attitude.

She has been talking more, and she enjoys typical 2-year-old games such as peekaboo. She also throws typical 2-year-old fits.

Callie loves preschool and she has re-started her weekly physical therapy session. We’re working to re-start her aquatic therapy within the next few weeks.

This past Tuesday Callie saw her pulmonologist and her surgeon at Duke. The pulmonologist was pleased with Callie’s lung function tests, and we’ll soon be collecting data about her oxygen levels at home.

Callie’s surgeon was also happy with how she is healing. She is having a minor skin reaction to having the feeding tube present. The surgeon prescribed a topical medication to help with that. We’ll have to take Callie back in the next 4 to 6 months so the surgeon can change her feeding tube, a routine procedure that does not require sedation. Callie will continue to need her tube changed and adjusted throughout her life as she grows.

We’re hoping to attend the annual FightSMA conference in Washington, D.C., this spring, where Callie’s pulmonologist will be on the doctors’ panel. At last year’s conference we learned a lot about SMA and ongoing research to find a treatment or a cure.

Thank you for reading our updates and for your interest in Callie’s condition.

Callie’s been home from the hospital for a week, and we’re grateful to have a more normal life for her and the rest of our family again.

In the past week we’ve settled into a plan for Callie’s nutrition.

While she’s asleep we’re using her new G-tube to give her calorie-rich formula and fluids. While she’s awake she eats and drinks small amounts orally, based on her appetite.

She is not yet getting the calories she needs, but we’re slowly increasing the volume in her tube feedings based on how well she tolerates them.

We’re taking this process a lot more slowly than we did in the hospital, where tube feeding was making Callie miserable.

It’s been great to have Callie back home. She was very excited to be back in preschool this week, and we hope to have her back in physical therapy as soon as possible.

We’re planning to get back on track with thank you notes, too. But for now we’d like to thank everyone who has offered thoughts, prayers, money, food, cards, notes, child care, toys and other kinds of support. You’ve all helped keep us going through the past month.

Callie came home from the hospital today! She was glad to see the outdoors again and to be home with her brothers and her kitty.

By her fourth day of tube feeding, Callie had made it clear it wasn’t working for her. We base every decision we make for Callie on what she tells us through her body and her spirit. We listened to her and stopped the tube feedings on Monday night.

So even though she still isn’t taking in enough nutrition, Callie’s doctors and nutritionist agreed with us that Callie could do just as well – or possibly better – at home.

For the next day Callie is eating and drinking only by mouth so we can count the calories she is capable of taking in that way. By tomorrow we’ll have a better idea how much supplemental nutrition she needs through her new G-tube.

We’re hoping she will be able to tolerate her tube feedings better as she heals from the surgery in the next few weeks.

The upcoming days, weeks, and possibly months will be tedious as we figure out how to give Callie the best nutrition in a way that leaves her feeling healthy and happy.

For now we are thankful to have her home.

It’s been four days since Callie started getting nutrition through her new G-tube, and she’s still having a hard time adjusting.

She feels miserable with a stomach ache during and after her feedings, and it’s time to reassess the volume, calories, type of formula, etc., that Callie is getting.

So we’re still not sure when Callie will be able to come home.

The good news is that her surgery sites are healing well and that overall she’s in good health.

Callie had a restful night last night. She slept well and got pain medicine when needed.

She’s had more pain today and we’ve been working to find the right combination of medicine that will keep her pain under control.

We also started her on tube feedings today. She’s had a hard time adjusting to them, but we understand from the nurses that that’s not unusual. They’re working with the new tube to make sure she’s comfortable during the feedings.

Right now, our tentative plan is to feed her via the G-tube during the night and allow her to eat by mouth during the day.

When Callie was put on TPN through her PICC line, her lungs improved as well as her ability to swallow (although she’s still unable to take all her nutrients by mouth). Callie also gained 2.5 lbs in just over a week after starting the TPN! She’s finally hit that ideal third percentile on the growth chart and she’s had a lot more energy.

We’re hoping she can come home by the middle of next week. And we feel a lot better knowing that we now have a way to give her the nutrition she needs.

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.

It’s been a year now since we learned Callie has spinal muscular atrophy. That day is still strong in my memory so I decided to write about it.

Callie had just turned 1 and I struggled to keep her wispy hair in place while we waited in the doctor’s office.

A medical assistant came out to greet us. She gave Callie a big smile and said the doctor was ready for us. We followed in her cheerful wake and stepped into the designated room.

Callie’s 1-year portrait

The doctor came in right away and explained how the test was done. Its simplicity made me nervous. I had come to this appointment alone, thinking this was a routine test and we would get the results later.

I realized that I would know Callie’s diagnosis in a few minutes. I needed my husband, but I had told him it was a simple test so he may as well stay at work.

The doctor began by delivering electric shocks to Callie’s foot. She cried a little, but seemed unfazed overall. The diagnoses narrowed.

Then came the painful part: a needle-stick into Callie’s thigh muscle. The test didn’t work because Callie wasn’t capable of moving that part of her leg. So the doctor stuck her again in her lower leg.

I clung to her, trying to console her as the doctor called out orders so the assistant could hear him above Callie’s screams and the crackling whir of the machine.

Then the doctor quietly said, “OK.”

His shoulders slumped as he turned off the machine and waited for me to comfort Callie.

Sorrow thickened the air. It was what we suspected. I stared at my daughter, her large brown eyes framed with long wet lashes. I cried softly as I held her head against my own. I didn’t ask many questions.

The assistant offered to help us to the car. When we reached the front office, I told her I could make it to the car alone. My tears gave way to weeping as I walked out, still cradling Callie.

My legs trembled and I made a conscious effort not to fall under the weight of grief. I found myself repeatedly sobbing the words “I’m so sorry” to Callie.

She looked at me, knowing she should be upset but not knowing why.

My hands shook as I strapped Callie into her car seat. I pulled myself into the car, shut the door and reached for my phone.

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.