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.