Dean was born with tracheoesophageal fistula (TEF) and esophageal atresia (EA). I was enjoying a 5 year wedding anniversary with my husband at The Cheesecake Factory in Chicago when my water broke a couple months early. Dean was transported to Loyola Medical University in Chicago and had the repair surgery at 2 days old. We spend 30 days in the NICU at Loyola. Dean had multiple esophagus dilations for the first 5 years. No real issues with breathing until he was about 6. We discovered albuterol would relax his already floppy trachea and collapse, causing him to have blue spells.......doctors were quick to write off his breathing issues as "asthma". Winters living in Chicago were rough on his breathing. Humidifiers were a big help. We moved to Charleston SC about 7 years ago and realized how living in a smaller city limits the access to specialty doctors.
Not one doctor we have seen in Charleston has ever had a patient with TEF/EA, yet they were 100% confident his breathing issues were asthma or vocal cord issues.
We found Dr. Smithers of Johns Hopkins All Children's Hospital in St. Petersburg, FL.
He gave us his personal cell number after our first consult appointment and he texted me several videos of the surgeries he felt would help my son. Dr. Smithers also got our insurance to cover my son being admitted after the scopes and CT scan on Thursday so we didn't have to go to a hotel and come back the next morning for the big surgery. Dr. Smithers also personally came to the recovery room at least 3 times a day to check on my son.....even though the surgery team did their rounds to visit us. Dr. Smithers also knew Dean was overly anxious about having the chest tube removed so he personally came up to remove it himself. Johns Hopkins All Children's Hospital was great. There was free parking in secured garage and we felt extremely safe at all times. The hospital was very vigilant on cleanliness; we had our hospital room cleaned 2 times a day. The Ronald McDonald house is closed due to Covid but it's attached to the hospital for parents to stay in. The location of hospital is close to restaurants when you get tired of eating from the Hospital Cafeteria. Room service would call 3 times a day asking if they can bring Dean anything to eat, drink or snack on.
Dr. Smithers has the experience and excellent way of explaining things to both parents and kids. He was the first doctor that wasn't quick to diagnose and say oh it's just asthma or a vocal cord spasm. Even though we had just had scopes done at our local hospital MUSC in Charleston SC, Dr. Smithers did all his own scopes and CT Scans because MUSC wasn't looking for anything specific and they missed a Trachea Diverticulum which is common in TEF/EA kids. That diagnosis explained why my son had so many illnesses.
Also, the nurses at All Children's were all amazing. My 19 year old son was freaking out one night after he googled "removal of chest tube" and of course he believed what Google told him "which was that it was extremely painful". The nurse texted her friend that had recently had a chest tube removed and gave my son the phone to see the honest reply which of course was "zero pain". You have no idea how that little act of kindness allowed so much relief to my panicked son. Or that another nurse noticed that he was favoring a specific flavor of a boost high calorie juice box so she made sure she hunted down that flavor for him. Another nurse noticed that he was getting grossed out by an IV that wasn't being used so she just removed it on the spot. I can go on and on about how fantastic the nurses were. The anesthesia nurse on the day of the big surgery was a young new dad and I didn't expect to see him again once we were moved to recovery room. A few days after surgery he hunted us down to check in and chat about surfing with my son.
My son is almost 19 so he was by far the oldest patient at the John Hopkins All Children's Hospital. One nurse brought in a bright orange astronaut kids hospital gown and Dean put it on and paraded around the halls and the young kids that had their doors open thought it was the coolest thing to see a big kid dressed up in an astronaut gown walking around. The next day she brought a gown that had a cat and dog with a tail on the back of the gown. They let us take both home.