Hahaha...one minute off last night's post. Creatures of habit, OR WHAT??? :)
Hello all you beautiful people out there generous enough in your life to take the time to log in and read and follow and pray for us on our journey. You are the breath of life and strength keeping us moving through each day. Without you, this would all be going terribly different. Ang and I read each and every one of your posts at least once at day (once at night and if we have time, once in the morning). While we don't respond to them, please know that every one of you that has posted and visited (just seeing your name on the visitor list makes a difference!...but go ahead and post anyway! ;)) has been thanked by us. THANK YOU ALL.
Well, the day has arrived, and nearly gone. The biopsy was this morning. Armed with information for EBnurse.org, we strode into the NICU this morning with new confidence, clarity, and purpose. We were grateful to finally be pushed into reading about EB; that website is AMAZING. We learned so many useful tips that made a difference in Bella's care TODAY.
We actually told the staff a thing or two today! It was awesome because Dr. Metz was there to confirm what we were telling the staff. Here's the deal:
Dr. Metz felt Betty's wound care has been FANTASTIC and was impressed.
EB babies can deal with blisters in their mouth and still bottle feed.
Sooo....the big question was, "Was Bella averse to bottle feeding?" which the answer was, "No, she took it like a champ and was PISSED it was taken away and another tube stuck down her throat."
Sit down if your standing....
10 minutes later, Dr. Metz says to me in the nurses station, "They want to send [Bella] home tomorrow."
I just stared at her like a deer in headlights. Tomorrow?
Yeah, that's right, tomorrow, folks.
Now, it may be "as soon as" tomorrow, IF they can get the discharge planning complete by then, which anyone who knows hospitals knows is a daunting task to coordinate case managers home health, equipment, all within 24 hours. More than likely it will be early next week since the weekend will be a big waste of time since none of those people will be working.
Bella is medically cleared to come home tomorrow.
She can feed orally on her own and wound care can be done at home. The risk of infection, believe it or not, is much lower at home than in an ICU...so they want her out of there for her own sake ASAP.
It gets better.
Because she is a medical marvel and everyone wants a pice of this story, the company that manufactures the wound care products Betty is using IS COMING TO THE HOSPITAL TOMORROW to find out more about what breakthroughs Betty caused and how to potentially re-engineer some of their existing products based on how she has modified them. They are bringing BOXES of supplies for her/our use.
But wait, there is more.
The PR team at CHOC got wind of this story a few days ago and has been trying to contact Ang and I about doing a story on Bella and her music, but GOD LOVE or social worker for keeping them at bay. today, she finally told us they would like to meet with us, and we agreed. The power of music therapy and prayer needs to be read about as often and by as many as possible.
Your prayers are being answered. I say it that way specifically because Ang and I are CLEAR that the power YOU all are generating GREATLY exceeds what we have been able to do on our own. We acknowledge and own that we have stood and loved and nurtured and prayed and played over our daughter to the best of our ability, and that first line of support has been vital and crucial to her progress, AND without YOU...our army of positivity, love, compassion, generosity, and support...we couldn't have been so strong ourselves being the parents we've always hoped we could be.
Now, to the bad...
One of the staff, bless her heart, didn't realize yesterday when she hastily taped the feeding tube BACK IN, that you cannot use adhesives of any kind on an EB baby. So today, as I held Bella, I watched from point blank range the nurse pull that tape off bella's cheek, along with a roughly one inch long by half inch wide chunk of her skin.
Man, that made us so mad. Mad at the nurse for making a knee-jerk reaction while we were at lunch to reinstitute that feeding tube. Mad at the staff for not having read enough on EB to have known not to use ANY adhesives. Mad at the system for giving us a new nurse every day, so that every day, it was her first time ever dealing with EB, so the collective growth curve was far lower than it could have been. And, mad at ourselves for not being brave enough to read up on EB sooner.
What can you do? I don't blame anyone for it. Her skin will heal as it is doing so well. This case is so rare, everyone is learning as they go, including us...but man, in the moment...grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr...
Bella's face today is covered in blisters from her rooting yesterday after getting a bottle, then getting it taken away for 24 hours. She was trying to eat her hands, suck her thumb, self soothe orally all night and her face llos the way it does today because of this trial and error method that could have been avoided if our dermatologist had seen our baby 7 DAYS AGO when she was first called.
Thanks for enduring this rant. I know that we "practice" medicine, heck, I "practice" music therapy. I know that this case is SUPER RARE...but knowing doesn't stop feeling.
So, the long and the sort of it is that her skin heals well, but blisters so easily that the slightest friction to her skin causes it to separate. She IS a miracle, you're right! AND, the miracle isn't finished manifesting.
Bella's quality of life if her current level of severity persists will be debilitating. There are versions of EB that have "gone away" as children grow older. Here is the story I am envisioning, and I humbly request you do the same:
One day, years from now, Bella will say,"Yeah, when I was born, I had this rare skin condition, but somehow, it just went away when I came home from the hospital." She will speak of it with no conscious connection to her own words. It will be as if she is reciting an event from her history book.
However, this event will have left in its wake...faith strengthened in many all across the country, faith even restored in a few, and music, oh sweet healing music therapy for thousands of infants at CHOC over the years to come. Questions were already asked in meetings at CHOC this week as to why there is no music therapy in the NICU...they have a part time MT on the units...why not the NICU???
It all started with a song. Bella's song. Written by her mommy and daddy and recorded by her daddy in the midst of being totally sick. It was sung and played to her while in the womb for months, it resonated in the O.R. as she was delivered, and a tender, softer lullaby version floated through a NICU and helped heal the patients, their families, and the staff.
Oh, see the ripples in the pond you cause? YOUR PRAYERS gave strength for that third vital chapter to be written.
Hopefully, by the end of the day tomorrow, a new blogspot will be finished. My dear friend Jim Hornaday and his girlfriend Jody Gnant have been working hard on creating a public blog where you can go read about Bella, listen to her music, and if you feel like it, contributing to her care by downloading her song as well as a couple of others that are appropriate.
The site is www.careforanabella.com
you can also go to www.myspace.com/timringgold and hear and purchase "Bella's Song" there as well.
During the biopsy today, Bella started to have a meltdown. Before the third lyric of her song was out of my mouth, ( I was playing my guitar for her during the procedure), she stopped crying and looked up toward my direction of the room. She knows her song, and I think she likes it.
Finally, I just say publicly THANK YOU to my amazing wife Angelique and my beautiful daughter Alessandra. First and foremost, they the angels that keep me afloat each day. Thank you all for reading all of these words. I hope they inspire you as much as they do me.
Talk to you tomorrow.