Surgery Rescheduled

Kaitlyn was supposed to have surgery tomorrow morning but she has a cold! We decided to cancel it and reschedule for when she is completely cold free. We don't want to risk any complications or create a longer than needed hospital stay. We will keep everyone posted as to when the surgery will be rescheduled for. Thank you to everyone who has reached out to us and for all of the continued thoughts and prayers.

G-Tube Surgery

Ever since we found out about Kaitlyn’s diagnosis, she has had difficulty swallowing, a common problem with neurological disorders, like Niemann-Pick. We have been using a gel thickener called Simply Thick to thicken her formula so that she can safely swallow it without breathing it in or choking on it. In the past few months, she has been coughing more when she drinks her bottles and a barium swallow study showed that she is starting to aspirate when she swallows. The risk with aspirating is that she could develop pneumonia and end up very sick in the hospital. Her GI doctor and pediatric surgeon have both recommended that she have a G-tube surgically placed in her abdomen. This is how she would receive her formula and medicine; through the G-tube rather than by mouth. 

There are definitely risks with the surgery that make us obviously nervous. They are going to try and do the surgery laparoscopically but they may end up having to cut an incision in her abdomen if they have a hard time getting past her liver and spleen, which are both severely enlarged. Her recovery time with laparoscopic surgery could be a short as 3-5 days or with the incision more like 5-7 days, assuming there aren’t any other complications. 

Kaitlyn with her little brother, Cole

We plan on having a transition period where we slowly wean her off the bottles, so long as it is safe to do so, so that it is easier on Kaitlyn, psychologically. She is doing okay with baby foods however and her GI doctor felt that we could continue giving it to her as long as we aren’t seeing any coughing or choking.  Needless to say, the surgery will cause a complete lifestyle change for Kaitlyn and for us. 

We are very nervous about Kaitlyn’s recovery from surgery and how it will affect her spirit. Thoughts and prayers are definitely needed. Her surgery is scheduled for Monday, January 31^st at 10am at Levine Children’s Hospital. We will keep everyone posted when we can.

Welcome to Kaitlyn's Korner!

Thank you so much for visiting Kaitlyn's Korner. It means so much to us that you would want to know how Kaitlyn is doing and to learn more about her journey with Niemann-Pick Disease. So many of our friends and family members have asked how Kaitlyn is doing and what they can do to help. We would encourage you to pray for Kaitlyn, to spread the word about Niemann-Pick Disease, and encourage others to visit Kaitlyn's Korner. We will be posting frequently on how Kaitlyn is doing and how we can all support her. Again, thanks so much for taking the time to visit Kaitlyn's Korner!