Coughing and Choking

The last two days have been pretty rough on Kaitlyn. She's been coughing and choking on her saliva a lot, even when she is laying on her side, which normally prevents her from breathing it in. She had a number of times where she was choking and gagging and trying to vomit too.

Sorry I don't have any new pictures to share but here are some oldies but goodies of Kaitlyn Kay.

Kaitlyn at 6 months old, eating baby food- January 2010

She can't vomit or burp though cause she has a nissen. A nissen is a procedure where they take part of the stomach and wrap it around the opening at the top so that if her stomach contracts for any reason, it will tightened and close off the top of the stomach, preventing her from aspirating (breathing her saliva into her lungs) reflux or vomit. The reason she had this done back almost a year ago when she got her G-tube put in, is that if she were to get a bacterial infection or a virus in her upper airway (nose, throat, ears, etc.), it could spread to her lungs causing pneumonia if she were to aspirate. 

Kaitlyn at 6 months old- January 2010

We have been trying a number of things to see what will help ease the coughing and choking. So far, doing breathing treatments with albuterol every 4 hours and giving morphine regularly has been the best route. At least today was better than yesterday. Stephanie, RN came and checked on her and her lungs sound okay, which is good.

This time last year- January 2011

We stayed upstairs today and skipped the bath.We didn't want to have to be suctioning her while she's in the bath tub. It just wasn't worth getting her upset or putting her through that. So Kaitlyn and I hung out all day and I was actually able to do some cleaning in our master bedroom! We even moved Kaitlyn's dresser from her old room to our room. It will be so much easier to have all of her clothes in our room and a place for sheets and mattress covers.

This time last year- January 2011

We also learned of another child that has just been diagnosed with NPA. He is 8 months old and he and his family live in Maui. The mother, Chelsea, contacted me after seeing my blog and we had a chance to communicate a bit through email. They have had a blog for awhile now for their family, before getting the diagnosis. Please keep this family in your thoughts and prayers. I can still remember when we got Kaitlyn's diagnosis. I felt like my world was shattered. This family also has two older boys who do not have NPA.

I'll take that! Kaitlyn 18 months old- January 2011

When both parents have the genetic mutation for NPA, like Chip and I do, each child we have together has a 1 in 4 chance of having NPA. There is a 50% chance that each child will be a carrier (unaffected by the disease, but their future children could have it if they have kids with someone who is also a carrier).

January 2011- Cole is a carrier for NPA but not affected by the disease.

Here is the link to their blog. http://oursonnylife.com

A prayer for their family:

Father, we believe that when we see you, any suffering that we endured on the face of the earth will be worth it. Help us to understand. And when we cannot understand, help us to trust.
~ Max Lucado