7/28/08 - Just a Bump in the Road, No Problem!!

That is exactly what Kayleigh is saying right now! "Yesterday was just a bump in the road, No Problem" as she is just about back on track. It was great to see Kayleigh without the CPAP Beanie on so we could see her face and hair. She didn't grow much hair and it still doesn't really determine whether we are going to have a blondy or a burnette. She did take a moment to look at Daddy for the camera. Sorry it didn't come out real clear, but I didn't want to use the flash and scare her, let alone hurt her eyes. I got to hold her for a moment while the nurse changed her sheets. She is so tiny in my hands that I just still can not believe my eyes.

Today was a very productive day. Kayleigh had a couple desats throughout the whole day, but was great for the most part. They weaned her oxygen down to room temperature with the vent, so that is crazy since yesterday she was struggling with the CPAP. I really think that Kayleigh just doesn't prefer the Bubble CPAP because they can never get it to fit her good for long periods of time and it causes her stomach to be bloated with trapped air. Speaking of her stomach, it has gone down quite a bit and that could be because of her not being on the CPAP or that massive poop she had today.

The x-rays came back with no issues with her lungs and her blood gasses came back normal. They said they would put her back on the CPAP, but since they just moved her to the vent, they don't want to keep intubating and extubating her. Sometimes Kayleigh will extubate herself and they said they will leave it out if she does it. We noticed today that she just loves to pull on the tube and also grab wires and pull them out of their set places. Since everything was moving back to normal, they started her feeds back again.

I am just pleased with all the issues going on yesterday, they were all taken care of and she has cleared the hurdle and continues to move in the right direction. We are so proud of how well she is doing. I felt some of the bricks fall right off my back today because I realized the balancing act has pretty much been figured out. Since we have had some good days and some bad days, I feel like the doctors and nurses have all figured Kayleigh out to the point that they know what to do if she starts to have some issues. It is not so much a trial and error anymore. At the beginning, it may have taken a couple days to figure out what could be causing the desats and apnea, and then another couple days to figure out how to treat it. Now, it took one day to notice a problem and one day to fix it. That means the world to me and allows me to not get so parynoid when something starts to go bad. Just as long as we don't have anymore surgery surprises, I will be okay.

Now this is totally in left field, but did you ever want to know what veterans from the war ever talk about when you go in to your local Wal Mart or McDonalds early in the morning. You think they would be sharing their old war stories, but then over time you might think they would run out of stories to tell. I have had the pleasure to meet many different people throughout Kayleigh's journey, but one that stands out above the rest touches my heart very deeply. I just learned from an Aunt of mine that there is a group of veterans from the Vietnam War who meet every morning for coffee at a Bob Evans in a very very very small town in Ohio. Everyday, they talk and pray for our sweet Kayleigh and you would think that our little girl would be the last thing on the minds of such heroic men of war. To those wonderful veterans; Our family is truly blessed to be the topic of conversation every morning. One thing my little girl does have in common with you guys is that she is a true fighter. God Bless you and Thank You for serving our country with honor and Thank You for praying for Kayleigh.

The Freemans :)