>> Thursday, July 9, 2009
I have been pretty distracted today by my daughter's condition, but also with another CDH baby who really needs your thoughts and prayers. Baby Avery is having a tough time right now with swelling and they are desperately trying to find the cause. I just read that her kidneys and heart seem to look ok, so the doctors are a bit puzzled. This is a wonderful family that has been through so much and are understandably scared out of their mind right now. If you click on the button on the right side of our page for Avery, it will take you to their blog and I know they would appreciate your support and prayers.
This morning started off a little scary when I called to get her blood gas readings. Her CO2 was up to 74. I knew this was going to happen at some point, I was just hoping we could get to a pressure of 20 before Kamryn told us to chill out. No changes were made and her blood gas this afternoon showed her CO2 at 73. She is definitely telling us to chill out with changes to her vent and that's exactly what is happening. The good thing is her CO2 didn't shoot up to the 80's or 90's like it did the last time we hit a wall. Right now, I think she is struggling just a bit to keep her CO2 down with the new settings, but she is tolerating it. This is definitely not a setback, just her telling us she needs some time to adapt and catch up.
I am really excited about her feeding! She is off the continuous feed and has been placed on a schedule of 9cc's over an hour every three hours. The total amount she is getting throughout the day hasn't increased, it's just on a schedule now. The best thing about this is they can check her stomach just before her next feed to see if everything has emptied and sure enough she is processing everything just like she should. This was definitely positive step for Kamryn!
For the first time in 22 days, I didn't go to the hospital to spend time with her. I had a bit of a scratchy throat today and wanted to make sure it was just allergies. It was tough not going up there, but she was in terrific hands with Tamara who is one of her primary nurses.
Here are some pictures of Kamryn's first bath yesterday!
The plan tonight is to let her rest and try to adapt to the new setting and then get a gameplan tomorrow morning after her 4:00am blood gas.
Thanks for all of the continued prayers and support! We couldn't do this without all of you pushing us forward!