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.