So much for trying to get to bed early...
First off, Happy Birthday, Zoe! Our close friends' daughter (and one of Ali's bestest friends) turns 4 today! YAY!
We're still up because we are preparing for tomorrow morning. Tomorrow morning, we FINALLY meet the Pediatric Dermatologist, Dr. Brandie Metz from UCI Medical Center nearby. She is consulting with everyone at CHOC tomorrow morning as well as doing the very specific test to confirm diagnosis and determine subtype. There are staff literally lining up to pepper Dr. Metz with questions regarding Bella's care. The Director of Nursing, Linda Glenn, told me today that maybe one patient A YEAR comes through CHOC with this diagnosis...
...what diagnosis do you ask?
Well, we have been witholding this information to save you all from reading unnecessary information on the web about a very complex and rare disorder. Some of you (you know who you are) went out on the web anyway...I can see that it is very tempting, but I implore you to resist the temptation to try to peg this one.
Here's what we know:
Bella's symptoms present like Epidermolysis Bullosa, or EB. There are 4 types of EB, with multiple subtypes. Each subtype can vary in severity widely. It takes this very specific biopsy tomorrow to determine the type and subtype. EB affects 1 in 50,000. The biopsy will be sent to Stanford University (literally the nearest facility that can read this type of test) and we go from there.
For example, Bella presents with symptoms that both support AND confound a diagnosis of 2 of the 4 types. Even within one of the types, she presents like two subtypes...
So, more will be revealed tomorrow. Now, back to today's Summary:
We walked into Bella's room and there was no feeding tube in her nose!
Mommy and Daddy both got to bottle feed Bella this morning!
Wound care looked GREAT after yesterday's breakthrough. Great job, Betty!
Bella was awake and alert during the day now that she is off morphine!
Daddy met with the Director of Nursing who thanked me for transforming the vibe in her NICU through the music I played in there since we got there last Wednesday. I asked her permission to continue to play in the main pod that connects three 8-bed units while Bella recovers in her new private room. She couldn't believe it. She gave me the green light and sent out a communique to all staff as a heads up that I've got her blessing.
When Daddy returned to the main pod, I started playing for a couple and their preemie. After talking to each other for a little while, we shared about how powerful prayer is. When I confided that I am conflicted about asking God for a miracle, they came to Bella's room and prayed over her and...prayed for a miracle. How do you ask for God's Will and a miracle at the same time? They seemed to have that figured out and shared with us.
Because EB is so rare, most of the tx team has never treated a patient with it. We are stumbling through the treatment a little. They used a special bottle on Bella, but didn't know exactly how to use it. The development team was not too happy about that.
After the bottle feeds today, Bella developed new blisters in her mouth and was really agitated for the rest of the day. Her feeding tube was then put back in. No more bottles.
Bella didn't get enough pain relief before her bath/wound care. She screamed and cried all the way through. That sucked.
There is a subtype of EB where patients claim to "grow out of it" by the time they reach grade school. Through the power of prayer, could she perhaps grow out of it sooner? Her skin is sooo sensitive. We really need a miracle. Please create in your thoughts, prayers, intentions, and meditation that her skin heals and stays healed forever, that no new blisters appear, and that this condition clears up for good.
God heals so many so often in so many ways and so many places. We humbly ask that this child is granted this same grace beginning today.
Thank you to all who share in this sacred moment.
We are blessed by your love and generosity.Good night, be well, we'll talk to you tomorrow.