July 8th: Day +6

Our prayers were answered!

Today was like I died and went to nurse and RT heaven! LOL.

But first, let me tell you about crossing off one of life's to-do list items. Today, I got to walk my little girl Ali to school, down the sidewalk, though our neighborhood, hand in hand. The whole time, she told me all about school. It was just the greatest feeling in the world. Tonight, I took her on the swing here outside the hospital in its pretty plaza, and we played on the swing, chased bunny rabbits, birdies, and a big squirrel through the grass. Life IS good.

Also, grandma returned to help out till my mom arrives next week. It is SO nice to have her back. Life IS good, indeed.

On the Bella front, not too much to report. It was a relatively quiet day for her. She'll get another chest x-ray tonight so we can look at the atelectasis and see where it's at today. The docs were ZERO percent worried about it in rounds. Sam, the head ICU doc, said quite casually that it happens when you put little kids on ventilators. They practically expect it. So, if they're not worried, I'm not worried.

I walked into rounds from walking Ali to school, and my nurse takes one look at my Germany T-shirt and says, "Ohh, my daughter and I were SO MAD when Spain scored yesterday! We just LOVE Germany and are SO UPSET!"

Okay, where's the hidden camera? This angel of a woman was probably in her late 50's and an absolute HOOT ALL DAY. I get her for the next 3 days in a row, too! Lori, I love you!

I had an AMAZING conversation with the nurse manager over here in the PICU today. She couldn't have been more accommodating. She had heard that I specifically requested not to have the same day nurse ever again, and wanted to give me a chance to give any feedback and tell her directly what happened so they could address it. The conversation progressed into what the experience has been like for Jennifer and me in the PICU and the various levels of care that have been encountered. The conversation ended up with us discussing shooting a video of me explaining the parent perspective and delineating between "being" and "doing" in patient care. Two nurses or RTs can come into the room and "do" the exact same treatment, but how they are being - grumpy, annoyed versus compassionate, nurturing - completely transforms how the patient and family relate to what the staff member is doing. Around here, you have to have what you are doing handled so you can also be conscious of how you are going to do it. On one other unit, the nursing manager got such a powerful story from one grandma about the family's experience, that the video'd her and they use the tape to train all their subsequent new hires. Well, once Bella is discharged from the hospital and we have lots of down time at RMH, the nursing manager wants to make a video of me that they can use to train all the new nurses as well as show existing nurses during trainings and in-services.

Anyhow, it was a wonderful time to vent, and get off my chest everything I've been sharing on here. Then, later on in the p.m., a new RT came in the room and was as polite as all the nurses and said, "you just tell us exactly how to do anything for you because with EB, YOU ARE THE EXPERT!" I couldn't believe my ears!

Welcome to CASINO BELLA! Lights! Action! Excitement!

My view from my "chair"... is there a baby in there?

Can you find the thumb in this picture?

P.S. It is DAYLON'S FIRST BIRTHDAY TODAY! HAPPY BIRTHDAY DAYLON!

Make sure to drop by the Edling's blog and wish him a happy birthday, because it is TRULY a blessing that a little boy with Junctional Herlitz EB gets to see his first birthday, even if he's in the PICU!

http://lovingbabydaylon.blogspot.com/2010/07/happy-birthday-daylon.html

Okay, I am BEYOND exhausted today so I am going to chair EARLY. (I can't really say bed since I'm sleeping in one of those pull out chairs... this one's not too bad; I've had worse in SD and OC!)

Love and Gratitude,

Tim