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.
So sorry that you are going through this. I pray everyday that God will sustain you with the strength and peace that only He can provide. You are so blessed with this beautiful little girl. Thanks for the updates and we will continue to pray for you and the whole family.
Christy and Nathan
Light and love we send your way and pray the surgery goes exactly as planned. We are also praying for the surgeons, nurses, and support staff that will be there as well. The community in there and out here are praying for healing.
Love,
Peggy and Sam
Dear Nathan and Family, Thoughts and prayers are with you as you anticipate and walk through tomorrow’s surgery for Callie. May God’s constant love and grace bring you peace.So glad she had had a good week.
Thank you, Christy and Nathan, for taking the time to keep us updated and for sharing your thoughts. All of you are in my thoughts and prayers. I love you and pray that all goes well and that Callie is home with you and the boys very soon.
Nathan and Christie, we will be praying for Callie and for all of you. I know God will guide the doctors through the surgery and he will place his comforting arms around each of you while you wait and while she recovers. I hope and pray that she will have a quick recovery and you will be able to take her home with you where she belongs. Give her a kiss for me, she is a very precious little girl.
Thank you so much for the update. You have all been in my thoughts and prayers and I pray that Callie’s surgery goes well on Thursday and that she will recover her strength quickly. I will be praying for all of you in the days ahead. Take care of yourselves as well.
I pray that things will go well with Callie’s surgery. Know that I am thinking of you guys and will keep you in my prayers.
I’m sure you have the ‘normal’ anxiety as Callie faces surgery, although nothing is normal for what you are going through, and I can empathize with you to a degree.
Although Anna underwent wrist surgery at 27, and we both had concerns, I can’t imagine having a baby facing surgery that has been a serious decision for you.
I know God loves all of you and will comfort you, and lay His hands on all of you. I pray that Callie’s doctors will be guided by His hands as they perform Callie’s surgery.
Know that we are praying for the entire family and have had you on our minds constantly throughout the days since we learned of Callie’s diagnosis.
I will have her on our prayer list at church, and will be anxious to hear from you in the days ahead.
Take care. We love you all and pray surgery goes well, her recovery will be quick, and the decisions you have made will help her in all the ways you are trusting they will.
Strength to handle all that has come your way is my prayer for you all. Your optimism is awesome, and we share in that. God is good!
Thanks for the update will let friends know i will pray for good surgery and recovery. the kids in sunday school at church will be doing cards next sunday
God bless you all. You are in our thoughts and prayers. Your thoughtful decisions on behalf of Callie are an inspiration to so many of us. We pray for your strength and wisdom and peace of mind.
Thank you so much for taking the time to send these updates. You are loved by so many and my family continues to lift yours up in prayer.
Christy & Nathan.. you and your whole family are in my thoughts & prayers… I know this is exhausting for you emotionally and physically.. Praying all goes well both for surgery and recovery… and you can all be home again SOON!
Nathan, I pray constantly for all of you – of course for Callie, but for you and Christy and the boys as well. I know this is very difficult for everyone on so many levels. I love you all very much and am blessed that you are my family.