Big Shout out to our dear friend Jim Thomas whose birthday was Friday! Our bad, Jim!
In 24 hours, God willing, I'll be typing in this same position while Bella lies peacefully in her cradle at the foot of the bed I'm typing on.
In 8 hours, I'll be prepping for our final in-hospital wound care dressing change session with Betty our PT who is coming BRIGHT AND EARLY AT 8 AM to Bella's room. (Why Betty? That is just m-e-a-n. j/k we love you)
The fatigue is running deep, and anxiety high. The last two days have been exhausting, more so mentally and emotionally. Transitioning so quickly into EB wound care specialists has gone well, but has required every ounce of concentration and focus...two things we've been running in short supply of since the 27th. We realized that because of Bella's rare condition, we're going to know more about how to dress and care for her wounds than a nurse assigned to drop in each day. This has already become the case at CHOC. This is a little scary because, on the one hand, we expect of ourselves to be our daughter's first line of care, but learning about skin healing/infections, and types of dressings, how to apply what when...it's a lot when it's NOT your kid. I'll spare you the long tedious order of operations, but each limb has 8-10 steps depending on severity (left leg is still the doozy). However, each day, we troubleshoot and brain storm and learn a little more about how to do better for Bella. Wound care is the most painful part of this disease. EB patients liken their blisters and lesions to 3rd degree burns, so what we are concentrating on now is how to minimize the time the wound is exposed to air. That reduces pain and risk of infection, the two big hurdles this condition throws at you.
Having said all that, Ang and I completed all Bella's dressing changes in 2 hours flat today! Big improvement from 3.5 hours yesterday.
Katie, the PT today, said that CHLA (Children's Hospital Los Angeles) used to have an outpatient EB wound care clinic. She gave me the name of the PT Director there to follow up with to see if they still have that service. CHLA isn't anywhere close to where we want to be schlepping for any reason, but in case something gets too intense for us to handle with home care nurses, it will be nice to know a clinic specializing in this is only 50 miles away. (Let's hope they still have it!)
Bella is feeding like a champ with the Haberman Bottle still although we will have to fortify her breast milk with protein and extra supplements. That's cool. Mommy and daddy take supplements and protein shakes, why not our daughter?
Unfortunately, this afternoon, Bella started to display some unusual behavior that alarmed our nurse. She was twitching uncontrollably during sleep, and her heart rate spiked over 200 beats per minute during her afternoon bottle. She was also really upset whenever awake in between sleeps. She turned all sorts of dark red and purple today during her screaming fits. It was enough to completely break your heart. The resident on hand didn't think it was another seizure because seizures rarely happen in your sleep and the twitching needs to be more rhythmic and steady than Bella's was. No one had an answer for her heart rate. I walked in to the hospital confident of her medical condition, but nervous about her wound care. I walked out of the hospital nervous about her medical condition and confident (mostly) about her wound care. The switch was off-putting, and I am definitely scared about how tomorrow is going to go. Thank you for all your thoughts, wishes and prayers. All of us really need them at this crucial juncture.
Meanwhile, thanks goes out to so many for so much. I just don't have any more gas in the tank tonight.
Keep creating this vision with me: One day, Bella will look back and say, "Yeah, when I was born, I had this rare skin condition, but when they took me home from the hospital, it just went away."
I hold on to this vision with a tired and fragile grip. So many have learned so much in such a short time since Bella's arrival. We pray that once she is home where she belongs, she sheds this disorder and blossoms into a fully functioning, inspirational child and adult capable of all the things her big sister is capable of.
Please keep the messages and comments on the photos coming, and please visit myspace.com/timringgold to download "Bella's Song" as well as several others to help support Bella. (edit- the songs can also be purchased above! Thank you :) )
We love you all.