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!
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! :)|