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.

Callie has done so well over the past two days that her doctors are talking about sending her home this weekend.

Her at-home bipap machine arrived at the hospital today. She will wear it tonight to make sure there are no issues.

We’re hoping Callie will continue to eat and drink more each day. We will discuss long-term nutritional issues and possible long-term bipap use when we follow up with her pulmonologist in a couple of weeks.

We’d like to thank my parents and sister for driving up for part of this week and this weekend to help with our boys. And we continue to be grateful for the love and support from so many people.

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.

Callie had a restful night (and afternoon nap today) on the Bipap machine.

However, her IV went bad twice, and the IV team cannot get another IV going. Her IV likely infiltrated (burned through the vein to where fluids were leaking into the surrounding tissues) because of the nutrition solution she was getting, despite it being a milder concentration.

The doctors are considering other options for IV access, such as a central line or a PICC line. Both of these options are more invasive and prone to infection if not cared for properly. But both also would allow Callie to get more fluids, nutrition, etc., without damaging her veins. And both could be a source for future blood samples so Callie wouldn’t have to be stuck each time the lab needs a sample.

So we’ve reached a difficult spot when it comes to her nutrition. We’re hoping to be able to sort out what is best for Callie in the next day or so.

Please pray that Nathan and I will be able to navigate these difficult decisions that are coming sooner than we had anticipated. Thank you for all your prayers and supportive words on this blog.

We’d also like to thank our friend Deborah, who set up a meal rotation for our family.

Last night was Callie’s first night on bipap and she did very well. She didn’t fight it much, mainly because she was completely exhausted.

She had one troublesome episode during the night, but we took the bipap machine off to deep-suction her. She still couldn’t keep her oxygen levels up after that, even with the bipap. But that was easily remedied by putting oxygen flow into the bipap machine.

Today she was much more alert and playful. She talked a lot and wanted to read books. She even smiled at some of the doctors, which was a first!

She wore the bipap again during her nap and did wonderfully. A lot of children with SMA take quickly to a bipap machine because they realize they can rest better and breathe easier with it.

Tonight, Callie will be getting something called Total Parenteral Nutrition–TPN–through her IV. That’s basically all the electrolytes, calories, protein, etc that she needs in a day. The TPN will be a regular order until her feeding improves.

I was hoping that Callie might be able to come home by the end of the week, but her doctors say that although it’s not impossible, it’s not likely.

She’s still a little too unstable from a respiratory standpoint and her lack of nutrition is a big hindrance as well. Her doctor wants her to have a couple days of rest on the bipap and then see how she’s doing. If she’s still not eating well, we’ll be discussing some other feeding options that could allow her to come home.

We appreciated the visits from our pastors yesterday and today. One of them even brought blueberries and Cheerios, Callie’s favorite foods.

Nathan and I are starting to feel the strain from our family not being together for this amount of time (Duke is a good hour and a half away from our home). We sincerely appreciate the support and prayers from so many people and especially from our church family.

It’s been a shock to us that a common virus followed by a cold has had such a dramatic impact on Callie’s health. We always knew it could, but really didn’t understand how bad it could be.

Close to midnight last night, Callie spiked another fever. The doctors drew some lab work and started antibiotics, even though they still feel this is a virus.

Callie continued to have trouble with her oxygen level last night and we administered “blow-by” oxygen–a tube that blows oxygen near her face. That got her through the night pretty well.

However, this morning, her oxygen levels were in the 80s. She was wide awake and we had already done our little routine of chest PT, cough assist and deep suction. This time, we put oxygen directly into her nose, which helped some. Even though she was exhausted, we did a second round of deep suctioning. That seemed to do the trick because her levels came up to the low 90s and she took a nap afterward without requiring oxygen.

Her pulmonologist, an SMA expert, came to see her today and decided to start putting a bipap machine on her while she’s sleeping. A bibpap machine basically forces oxygen into the lungs and will help her breath easier, clear secretions and rest better. It’s non-invasive ventilation as opposed to intubation with a ventilator. He doesn’t think Callie will need to be on a ventilator during this admission.

The only other lingering issue is Callie’s nutrition. She hasn’t eaten well in about 4 days. Although she’s getting IV hydration, she’s not getting enough calories. That also affects her breathing since she needs energy to help herself breath. We plan to start IV nutrition tomorrow. Our hope is that the bipap will help get her through this difficult period and that she will start eating well again before needing more invasive methods of nutrition.

Thanks to Fran and Sandy for keeping our boys today so Nathan and I could be at the hospital together with Callie.

With the exception of one low-oxygen episode, Callie rested well last night. But after waking this morning her oxygen level started dropping below 90 percent, and it was not responding to the usual interventions such as cough assist and chest PT, etc. So a respiratory therapist tried deep suctioning Callie’s lungs, which helped get her oxygen saturation level back into the 90s.

The doctors think the virus has run its course but that the lingering effects — increased mucus (i.e., a common cold) — are too much for Callie to handle on her own.

We now have a plan for administering oxygen tonight if Callie needs it, and although the doctors have been in touch with her pulmonologist all weekend, he will be back at the hospital tomorrow. He may order a sleep study to see whether Callie needs more oxygen intervention, which we don’t yet have available at home.

So it seems she may be in the hospital until mid-week at least.

Since Callie’s diagnosis about a year ago we knew this kind of week was coming, but we were not prepared for it.

We are thankful for your prayers — which we see as the only explanation for Callie’s restful night last night. We also would like to thank Chris and Sandy Franks, Pam Mercer and others at our church for helping take care of Callie’s three older brothers today.

Thank you for all the prayers and concern for our family.

Callie’s doctors are confident that she has a virus and that it will run its course. She hasn’t had a fever since last night, which is definitely good news. We’re hoping that the worst has passed. However, she needs to remain in the hospital so the doctors can watch her closely and act quickly if necessary.

We’re hoping she’ll come home early next week.

In the meantime, I’m taking some of her stuffed animals and a couple of balloons to try to help keep her entertained. (Nathan informed me that the game of throwing her baby doll overboard has lost its magic.)

Again, many thanks to our friends, family and church for all of your support.

Callie was admitted to Duke University’s medical center today. Her doctors strongly suspect that she has a virus (RSV has essentially been ruled out) and children with SMA cannot tolerate common illnesses as well as other children.

Nathan and I noticed Callie had an increasing cough that began Wednesday night. This alone isn’t alarming or uncommon with SMA. Callie was seen by her primary doctor Thursday afternoon just to make sure everything was OK. All of her vital signs were normal, as was her activity level. We increased her allergy medicine because her nose was a little on the runny side.

Last night however, Callie’s health became more worrisome. Her oxygen level was low, her heart and respiratory rates were elevated and she couldn’t sleep.

We left for Duke’s ED first thing this morning after speaking with her doctors. By the time we got there, she had developed a fever as well.

She had a chest xray as well as lab work done. Callie is spending at least one night in the hospital because she’s still too unstable to come home.

We’ll know more tomorrow morning and the doctors have said they will check on her frequently during the night.

We would appreciate your prayers during this particularly difficult time for our family. This has served as a reminder of how fragile Callie’s life is. Please pray that we will not allow worry and anxiety to dominate our thoughts and actions.

Tonight, Callie has her special pillow and blanket, her stuffed fox, her “Little Elmo” and her Daddy to help take care of her.

And for now, she’s doing well.

Callie had an appointment with her pulmonologist (lung doctor) this past Friday. Every time we visit, Callie gets several lung function tests. She’s been sick 3 times since her last visit, so we were anxious to see what the tests would show.

Her lung capacity–the amount of air they can hold–is still the same, which is a big relief. Her muscle strength (the muscles that help her breathe) was slightly weaker, but not significantly so.

Overall, her doctor is very pleased with how she’s doing. He has a slight concern about her oxygen levels dropping low when she’s sick. We’ll be sending him some data from her machine that monitors her oxygen levels at night so that he can take a closer look at what’s going on.

Thanks to our friend and neighbor, Fran, who kept the boys for us while we made the trip.

This past weekend was also special because Callie turned 2 years old! We’ll be creating a photo gallery in the next month or so and will be sure to include pictures from her birthday.

Thanks for all the prayers and support so many of you give our family.

We’ll post again soon!