Posted (Tina) in All Posts on July-16-2008

Ella’s congestion was a little bit better today although she still had her fair share of coughing, gagging and retching on her secretions. Poor little baby!

Grandpa came by to visit and say hello to us this afternoon. When the time came, he stayed and decided to watch Ella’s PT session. Unfortunately, I had to wake her from a nap to start the PT session. She seemed okay initially, but then started to get really upset. She was not consolable which is not typical for her. Even the PT noted the drastic difference in her behavior.

She was acting like maybe she was having gas/tummy issues. Finally, I vented her via the g-tube. Sure enough, that seemed to be the culprit.

Our PT session was pretty much null and void about 10 minutes after it started. I could not get her to calm down. She was turning purple/blue, so it also required a significant increase in her oxygen to get her to calm down.

We have a nutritionist through the Early Childhood Development program visiting next Monday. She will review Ella’s current diet, do some calculations and see if she recommends any different strategies for feeding/caloric requirements.

On a personal note, we have a potential renter viewing our home tomorrow. Just praying for wisdom, discernment and patience for the right family. It has been slow the past few weeks, with a few leads here and there. We would really like to get the house rented, so we’re hoping it picks up before the school year starts.

Nurse Janet and her husband Jason will be coming down from the mountains tomorrow. They plan on staying the night at our home before heading back to Florida and babysitting Ella, so that Josh and I can have a date night! It was offered, so we are definitely going to take advantage of it. Right now, we have no idea when we might be able to find someone else that we trust to watch Ella. So we figured that we better take the date night!

This morning, I read of another CDH baby boy that passed away during the night. It was so hard to read about their journey. He was only a few weeks old and he fought so hard for his life.

I wish there was a standard protocol or “best practices” for treating CDH nationwide. This way, every parent could go to their local doctors and have confidence that their baby was being given the best survival rate possible. Heck, we had to travel half way across the country to make that happen. And as of right now, Dr. Kays still has the highest survival rate in the country. For this reason, it sure makes us want to find a way to promote Dr. Kays and his talents more. Parents just don’t end up finding him…that needs to change.

Only one week and Ella will be a year old…she’s such a cute little Bun.

Joel Snyder on July 17th, 2008 at 12:07 am #

Ella, Thanks for the visit today and thank Mom for lunch and a nice afternoon. Sorry about the short nap and the gas problem but it sure was nice to meet you PT. Things will get better for you as time goes. Have a great day and I will catch you later. Love,Grandpa!!!!!!!!!!!!!!

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