We are home

Thankful she is still here with us

We decided that the best place for Kaitlyn is at home so we took her home yesterday evening from the hospital. Once we put her in her stroller and rolled her out of her room, she had a huge smile on her face! It was so great to see her so happy.

Once we got home though, she was really fussy, which we think is from the caffeine they gave her at the hospital. The idea is that the caffeine would increase her heart rate, in turn causing her to be more stimulated to breathe. It makes sense but the effects of the caffeine caused her to not be able to take any naps yesterday, when she obviously wanted to sleep and she was so agitated at home that we aren't certain the benefit is worth it. We haven't given her any more of it and it will now be a last resort.

The My Little Pony Pegasus balloon was a must!

Other than being fussy and agitated, she hasn't had any more episodes where she has stopped breathing. We are hoping that the continuous oxygen and the Keppra will help to keep the episodes at bay.

We did have a hospice nurse come out today to talk with us about our concerns. He was really great and also informed us that although the Keppra is primarily used for seizures (which Kaitlyn isn't having), it also causes the smooth muscles in the body to relax. This could be helping Kaitlyn with pain and discomfort that she is having due to the progression of NP.

We are so glad to be home but it is really surreal because other than her episodes where she stops breathing, she is completely her normal self. The episodes in the hospital were terrifying. Watching Kaitlyn stop breathing and having to try and get your child to breathe with an emergency bag/mask yourself before the nurses come in (thank you EMT class in college) is anything but normal. That episode was the worst one she had and there was a moment that I thought was the end. It wasn't though, thank goodness!

The blue bag/mask above her head is what we used to give her rescue breaths

What happens is that she will be acting completely normal and then her eyes gaze off (like she is looking at something above her) and she stops breathing. It usually seems to happen after she has woken up from a nap and has been up for a few minutes. The only warning other than the gazing is her pulse/ox alarming us. She doesn't have any other signs or symptoms- it just happens that fast. One minute she's normal, the next she's not.

Happy girl

We are trying our best to make things normal at home and enjoy every minute together as a family. It is very difficult to relax though when you know things could change in a second. Prayers are definitely needed for us to not be so consumed with worry and anxiety over what could happen and to focus on the fact that she is still here.

I do believe that the prayers everyone has been lifting up for Kaitlyn are helping her and us to stay strong. I can't thank you all enough for the messages we have received. Your outpouring of love is truly appreciated and really makes a difference.

Thank you!