Shout Outs to the Best of the Best

*To those of you that have donated to the hospital, THANK YOU!  They sent in Santa on Christmas morning with a bag full of presents which ALMOST made the whole ordeal worth it! 😉 We are also super appreciative of the volunteers that come around to love on the patients and parents!

*To our family and friends that prayed for us, planned meals (especially the brillant idea of having pizza delivered to us, even when we were out of state), supported us, encouraged us, and held us up through the journey. We truly couldn’t have done it without you.

*Dr. L. G.- a pulmonologist that specializes in Cystic Fibrosis

He is an amazing listener, very knowlegable, informed of latest updates in medicine, supportive, humble, thorough, and overly helpful. He spent an hour with us at our first appointment,  thanking us for our thorough notes, explaining why he thought what he did, and offering suggestions for each area. Our wait time was never over 15 minutes. He gave me his email and would respond to questions within 30 minutes!!! He randomly emailed me to check how our son was doing. He messaged me FROM VACATION, stating that he would call insurance for me first thing Monday morning for the vest he fought for us to receive (which has made a significant improvement). He followed thru with everything he commited to.  He insisted,  “Do not worry, we will figure out what’s going on and help him!”

When asking him for permission to add his name to this site,  he replied,

“I am more than willing to help other families as well. Does not affect my salary, but the opportunity to serve others in need and help them out is what motivates me.”

*Dr. E.B./ Shannon- an ENT
He is also very intelligent,  not only in his field, but overall.  He is also humble, resilient, respectful, supportive, patient, and able to think outside of the box, following through with his ideas.  He also took the time to listen to me vent, offering excellent suggestions. He figured out several issues, to which his resolutions were successful. He also gave me his email and was just as quick to respond, joking that it wont always be that fast. He was the main reason we made it through our first check-up where they heard wheezing. He trusted me and my instincts! My husband says he reminds him of Dougie Hauser,  crazy smart and very young looking!

As for Shannon, by far the sweetest most helpful MA ever! Every message I left was returned within an hour, going above and beyond expectations.  She was always so compassionate, empathetic, and said she appreciated parents that would actually advocate for their babies. She answered questions that most nurses required me to make an appointment to discuss. I knew when they switched her because I didnt get a call back for the standard 3 days! 😉

*Dr. J.C./ Karen- pediatrician

Her kindness and compassion is like no other! I could sense that she physically felt my pain. She cares for our children like they are her own. She gave me her cell phone and tolerated WAY too many calls and texts. When she found out that we were in hospital,  she called and gave me a hard time for not letting her know. I explained I had bothered her enough. She insisted I keep her up to date and was the one who asked the hospital doctor to call her on Chtistmas to help get a pulm consult. She is typically very soft-spoken, but I could hear her giving her all to convince them!  She is also crazy intelligent, condfient, and proficient. I never feel rushed at her appointments and appreciate that.

Karen has been too sweet to forget! We always connected at appointments with our similar personalities and she goes above and beyond for her patients. I explained how bummed I was to be forced to pay $200 for Xopenex and she called back the same day with a few companies she had reached out to, in order to find a cheaper price. Another time, she scanned in around 900 (probably an embellishment,  but not too far off 😉 pages of our sons records to pass onto a specialist.

*Childrens Healthcare of Atlanta- Egleston-

In order to see our favorite pulmonologist, we drove just 11 miles south of the well-known one closer to our home.  Even though it took an additional 35 minutes due to traffic, it was well worth it.

From our prior experiences, I would feel guilty about being an advocate for our son.  From nurses to specialists, I would sense that they did not want to hear my perspective, as it interfered with their cookie-cutter diagnosis and treatment.  Not only did the staff at Egleston accept my suggestions, but thanked me for being so organized.  The ER doctor said something I dreamed of hearing in the past, “Mom, you know best.  What do you think we should do?”  We now recognize that an organization can be run efficiently, compassionately, and with the highest standards.  Employees at Egleston have not only proved that they care, but they appear to love their job and are highly qualified.  Some examples of staff going above and beyond are too numerous to list, but I will add a few.  I was lost in the hallway and a random doctor offered to walk me to the parking deck.  We forgot our son’s favorite stuffed animal and his nurse asked him what kind of animal and brought him a new one that was very similar, along with a matching coloring book.  I had a migraine and his nurse, Katie, brought me ice packs and water.  She also counseled me through the transition to ICU.  During a shift change, the nurse explained to his new one that our son has very sensitive skin around his IV and not to touch it.  This one means so much to me because I never explained this to them and was required to stop a nurse from causing multiple squeals of pain at the “other” hospital.  Any time they administered medication, they not only informed me, but also explained to me the reason.

*Goodrx.com tells you the price of your prescription at every nearby pharmacy.  They also have an app, so that you can quickly decide at the doctor’s office.

*East Tennessee Childrens Hospital/ Brandi-

We ended up there because we were visiting family and couldn’t make it back home. They insisted on keeping him until they found a diagnosis. They performed every test imaginable to rule out multiple possibilities.  More staff than not took the time to get to know us.  Not only medically, but also personally and would relate with those details. Each specialist and doctor that came to speak to us spent a few minutes relating with our son, then over 30 minutes LISTENING! To top it off, they would ask questions.  The one that made me cry was, “What do u guys think?!” We were 7 months in and they were the first to ask. Little did they know, I had lots of thoughts!  😉  One of the pediatricians taught me on the marker board for over 20 minutes and said, “Once you went deep with isomer talk, I decided to come with you!” They were very invested in us, making us feel like such a priority.  We didn’t go longer than an hour without a nurse or volunteer coming in searching for ways to make us smile.  Even if they were there for another purpose, not one person left the room without offering assistance!  One went out of her way to help our son set up a train she gave him, searched for batteries, and then a screwdriver to open compartment! One doctor gave my husband a hard time because he didn’t show her my ridiculously large notebook full of notes.  Another nurse noticed I was pumping for our daughter and insisted that I receive free meals!  Not to mention that the food was always fresh, tasted homemade, and often better than a restaurant. Yet another nurse manually crushed ice, calling it a slushy for our son!  A nurse in ER not only walked me to the gift shop to guide me, but also helped me choose which medicine for the headache I always got from Albuterol fumes (or maybe just stress looking back). Not only did that nurse write it on his notes, but the new nurse upstairs read that Albuterol gives me a headache, and she jumped up and got me a mask before RT administered it!  A registered dietitian came to see how he was feeling and asked what he is more likely to eat.  I said Pediasure and Nutrigrain bars.  She immediately brought two different flavors and said she wanted to ensure she found the one he liked! A child psychologist came in to talk with our son before his procedure. They had cars for the kids to ride in hallway, playroom with bucket to clean toys daily, and brought a movie cart to room several times a day.  Several employees apologized profusely for an oversight. The entire staff from top to bottom seem to truly enjoy what they do and displayed that with kindness. Not to mention that the cost was exactly half of our visit here, same amount of days and they performed many more tests.  Most importantly, we never felt rushed, that we were annoying them, or that they were judging us.  They also called us twice once we returned home to see how he was doing, confirm our stay went well, and answered questions.  A representative called from medical records because she pursued my question of why I received an email, but no records on the patient portal.  The nurses also sent us a handwritten postcard.

Brandi’s sweet nature and empathy still chokes me up. She would love on our son like he was family and cared for me like a best friend. Her bravery was what helped stop the spiral. She not only did her job well, but investigated what was happening. She noticed that he was getting worse with each dose and asked me if she could speak with pulm about stopping the treatments. During one of his attacks, she literally sat on the bed, hugged us, and cried through one of his coughing fits with us! On her next shift, she brought presents for our son and this letter which empowered me to press on and keep fighting!