Dilatation #2 ~ 7 Years Later! Hip! Hip! Hooray!

Synergy and serendipity often play a big part in medical and scientific advances.

Julie Bishop

We have had an eventful Friday that's for sure! For those that were not aware Bianca has been having some serious difficulties eating solids. Food was getting lodged & she was choking more than normal on every day items she loved to eat! She was ready and willing to do an esophageal dilatation. As a matter of fact it was the topic of choice on our road trip back from debra's PCC in Nashville, TN this past summer - she was adamant about having it done. She wanted it done before school began. She wanted it done so she can eat in peace. She wanted it done to have one less thing to worry about. All I was able to do at this point is respect her wishes. SHE WANTED IT DONE! This is her life therefore her decision to make - we have, after all, dodged this bullet for the last 7 years & 4 months since the last time. Now for many this might seem like the least invasive procedure in their lifetime when it comes to dealing with EB. However, for us, anesthesia has not been friendly. So our concerns were maximized knowing very well that Bee does not respond well to anesthesia. The game plan was to administer Albuterol prior to her going under. Glad to report it worked like a charm!

Our day started at 5:15AM - we arrived at the hospital at 6:00AM only to have to wait for about 4 hours before they even had her under. She wanted her daddy (superhero) to go back to the OR with her - we were thankful that they allowed one of us to go. Usually parents/family members are not allowed beyond those steel double doors. As we waited so many things ran through my head but much to my surprise her surgeon was back with wonderful news that I'll detail below. 

The staff at Jackson Memorial Hospital were amazing! Dr. Eduardo Perez, Pediatric Surgeon &  the anesthesiologist Dr. Amanda Saab were excellent! Everyone in between were so kind & helpful! I really cannot complain & best part Bee came out unharmed without a single new wound or tear! The entire team listened & applied every single request we had when she was under the care 100%. What a relief! Dr. Perez showed us some pictures of before & after of her esophagus which were amazing! He managed to get it all the way to 18MM = 1.8CM. The average adult esophagus is about 2.0CM. That's a huge feat for us! The plus side of all this is the impromptu scoping of her stomach lining. It is a pretty beige & smooth picture with no signs of gastritis! Total score! We also ran blood work based on EB specific levels but we will have to go back for those results later.

We arrived home around 430PM. Recovery was okay. Bee was very agitated & uncomfortable. She refused anything for pain or nausea. She kept getting more upset every time she was asked. We managed to get clearance after a few hours. She refused drinking any liquids or having an ice pop so we couldn't leave sooner than anticipated. Her chest X-ray was cleared if any concerns regarding perforation & her blood pressure/heart rate were steady. Only when she swallowed did she feel any pain or spasms. Bee took a nap as soon as we arrived but gagging reflexes are very strong so lots of spitting up. After a couple of hours she finally sipped some water but we have yet to try something cool & thicker like a yogurt. Hoping she soon has at least a frozen gogurt or for a peaceful night! Either one is welcomed!

We want to thanks SO MANY out there that reached out to us. Having you alll praying, sending positive vibes, well wishes and just shooting us encouraging messages helped us have a successful procedure. Also a warm thanks from our hearts to the Butterfly Fund for rallying their Prayer/Positive Vibe Warriors & sharing Bee's Amazon Wish List! I know I'm going to have one very happy tween in the next few days!

Post by The Butterfly Fund.

All our love ♡
The Contreras Family

P.S. As I was finishing this post Bee just finished up her strawberry gogurt! All she could say once it she finished it was "Oh man that was good!" All is good at the Contreras Household tonight! All is good!

Where we started!

Slowly beginning to expand it!

Then building upon it!

And finally wide open! What a difference!

The beautiful lining of her tummy! I can honestly say I am in love with this picture! I have been admiring it all day since it was handed to us this morning! :) 

It’s A Bloody Battle Every Single Day... (SLIGHTLY GRAPHIC)

Around these parts we go to war every single night. There are always casualties but many victories. Rarely do I post pictures of what we endure and these are in no way close to what many other children with EB go through - but we are still a small percentage of the population that before we kiss our children good night we must act as doctors, nurses, wound care specialist and nurturer before they slumber off to dreamland...and yet we always manage to find the comfort in one another every single day that is so important in our lives. Without each other's warmth we will wither away like grass and fade away like flowers who have no sunshine. So please make sure you give your children some extra love tonight! Even if they're already asleep!

Sometimes we have a night where we just pop one blister, slather on the ointments, wrap it up and keep going. Then there are nights like tonight. Bianca’s most delicate spots are the ones in the back of her thighs. She constantly breaks them down and heals them back up. When I think we’ve hit a turning point those two stubborn spots bubble up, the skin shifts and the cycle begins all over again. What is the most excruciating part is that there are times where these areas heal in a way where ONE SPOT decides to bleed out profusely and we can’t stop it. We can only try to move fast and put MediHoney, Silvadine or Neosporin along with the primary wound care dressing and wrap it up. The down part to this – by the time you wrap up the area blood has managed to seep right through the nicely clean bandages. By placing a new one on top we can say goodnight, pray that it will do some healing and redress it in the morning before heading out to a full day at school.

Is it unbelievable to say that throughout all this our beautiful daughter smiles and continues to go about her night as if nothing ever happened - tucking the dogs to bed, kissing us good night and even saying “sweet dreams”. How can I not appreciate life and have gratitude in all we do every single minute? She is proof enough that in this world we must continue to push forward without a second thought of looking back. We’ve been blessed so many times over by her presence – there is nothing I would do differently in my life if ever given the chance…NOTHING AT ALL!

The Remnants Of Today's Battle

The Victory Smile From The Battle Won Tonight
(Bee w/her new iPad from
Debra's Smile Fund - October!)

Little Things Just Little Things...

It's EB Awareness Week! 

In the name of creating awareness about the condition my beautiful daughter deals with on a daily basis I'm just doing a real quick blog regarding a few items around the house that buys us more quality time. Some might seem so minuet while others are crucial to our every day lives...okay ready...set...here we go...

Item: Liquid Ranitidine (Generic Zantac)
Why It's Needed: Allows for the acid reflux that is in her tummy to stay down. Those dealing with EB are on a very high liquid diet. All this liquid tends to sometimes come back up and erode the esophagus, in other words internally damage it just like the outside skin. Causing blistering that close up the esophagus or creates craters where food gets lodged in causing further damage. 

Item: Wound care supplies AKA The "Fun" Box
Why It's Important: Every single piece of gauze, primary bandage and supplies needed for Bee's skin to be at it's optimal care comes in this box every single month (or every other month during cooler weather). Receiving this box at our doorsteps feels EXACTLY like winning the lotto! Actually it feels more like winning a battle against the War of EB over and over again! Without these items Bianca would not be doing as well as she does today. Thanks National Rehab!

Item: Hanging pieces of Mepilex Transfer
Why It's Funny: I'm not sure about everyone else but in our house we tend to find these guys in all shapes and sizes hanging out somewhere. Here is a collection of the ones that are usually between Bee's fingers every night hanging out in our bathroom. As she gets herself ready in the morning she likes to make the bathroom vanity the "holding area" for these guys! Easy reference point I guess...but they're important! ;)

Item: Pump Dispensers
Why It's Essential: These simple items provide independence for Bee. It allows her to easily dispense the conditioner, shampoo and body wash so she can calmly take a shower and have control over some aspects of her life! As I've said before it's the most minuet things that give her freedom.

Item: Boost Nutritional Supplement
Why It's Crucial: Bianca eats very well for someone that is dealing with internal blistering and wounds. However there are many times where she can go a couple of days eating in such discomfort that only a liquid diet would suffice. This is where a supplemental product like Boost comes into play. I mix this up w/Coconut or Almond milk along with some Ovaltine to compensate for the calories she might not be ingesting during a bad spell. Thankfully this has been a major life saver for her and has kept her at an acceptable weight for as long as I can remember!

Item: RefreshPlus Eye Drops
Why It's A Must: One of the first layers of our precious eyes is made up of protein...Bee lacks protein...hence her eyes are also involved in the realm of EB. During the night hours many with EB tend to get corneal abrasions and tears. This is why having these eye drops administered religiously is vital in the care of EB. One bad night can turn into several dark, painful and frustrating days. 

So this is it for now in a nutshell! There are so many other items I can share with you so those that do not know can gain a better understanding to what we deal with every day. What can take someone one or two steps a day can take us ten to fifteen. And that's on a really good day...

Pumpkin Patch 2013 ~ Bianca

“Embrace your suffering, and let it reveal to you the way to peace” ~Thich Nhat Hanh

GET TO KNOW EB:
www.debra.org, www.ebmrf.com, www.ebnurse.org, www.thebutterflyfund.org, www.butterflysandbandages.org/, www.irefuseeb.org, www.eb-awareness.org, www.eb-resource.com, www.blog.ebinfoworld.com/