Tessa Jo’s Story

Tessa Jo is a sweet, loving child who was 41 weeks when born in Tampa.  There were no delivery complications and everything was completely normal.  She did have some murmurs that have gone away on her own since her birth in November 2013.  At her 4 month old check up, I brought her in for a normal review with the doctor and for vaccinations.  Her pediatrician noticed her breathing wasn’t quite normal and that she had a strong cold.  I didn’t think anything of it, but they started us on a nebulizer treatment and asked for me to bring her back the next day.  The next day, April Fool’s Day, I brought her back and thought Tessa had improved.  But there were crackles in her lungs and when the doctor left the room, she said, “Be right back.”  The doctor returned a couple of minutes later with an oxygen bottle and said “Ok, I called 911.”  Talk about a shock!  We rode in an ambulance to the hospital and I called my husband, who was convinced I was pranking him and I had to send him a picture of the ambulance ride.

We were in the hospital for 5 days, and it was later determined she had gotten corona virus, which generates a respiratory reaction similar to an RSV infection.  We were assigned a pulmunologist, who eventually would diagnose her underlying condition.  We left the hospital in good spirits, thinking everything was back to normal.  That spring and summer, she was doing okay but still was tugging when breathing.  At her six week check up after the hospital, the pediatrician thought she was tugging too much and suspected laryngomalacia, a fancy name for a structural defect internal to her windpipe that makes the windpipe soft and difficult to breathe through (think a straw that constantly flops over).  The pulmunologist did a bronchoscopy in June 2014 (7 months age), which indeed did show she had a structural flap and a soft windpipe, which normally goes away at around month 12.  We again left the test in good spirits thinking that everything was back to normal.

At her 9 month appointment, Tessa showed no signs of gaining weight she since was 6 months old.  We were referred to a GI doctor, who quickly did a swallow study and a sweat test.  I didn’t research what a sweat test was and was completely shocked when the nurse told me it was for Cystic Fibrosis.  Both of those tests were normal and promised myself I would start reading more so I wasn’t always so surprised when I was around doctors 🙂 .

The GI doctor suspected that it was related to her lungs.  We had persistent crackling the entire summer of 2014 with low weight gain, significant reflux, and tugging while breathing.  The pediatrician and urgent care doctors frequently gave oral steroids, nebulizer treatments, and antibiotics.  None of these helped with the persistent crackling.  My mother took Tessa to her next pulmunology appointment.  Because of all the issues and the documentation I provided about the many rounds of medicine we underwent the previous two months, combined with the low weight gain, the pulmunologist immediately admitted her to the hospital for additional testing.  He wanted a chest CT scan, a complete immunization panel for her blood, which we did while an in-patient.  These tests showed the ground glass opacity in her lungs and she was diagnosed with NEHI Syndrome.  Because she had plenty of symptoms that showed NEHI, we didn’t pursue a lung biopsy.  Interestingly, the pulmunologist who diagnosed us, Dr. Paul Houin, was a resident with Dr. Deterding and had just arrived at our pulmunologist’s practice the month prior to our admission to the hospital. 

That was when Tessa was 9 months old.  She was sent home on oxygen after a five day stay and we’ve rarely had to use a nebulizer since then.  She was on 24 hours a day oxygen until she was 14 months old, at which time she switched to afternoons and sleeping oxygen.  At 16 months we went to oxygen while sleeping only.  She has done really well, and aside from getting her adnoids out and ear tubes in when she was 19 months old.  Her cadre of dedicated doctors has helped us tremendously.  I am so thankful for our pediatrician who always knew when it was time for a referral and helped us navigate how the different systems of the body work together.  I never knew increased pressure due to the difficulty breathing could cause so many reflux like issues.  She is now almost two and is doing really well, eats a large quantity of food by mouth every day, and plays at her daycare to her heart’s content.  I should mention, Tessa has been in daycare since she was 8 weeks old and we have had struggles with day cares handling her medical requirements of nebulizations and oxygen bottles/concentrators, but we have found a great school that has no problem helping us sustain her growth both physically and academically.  It took great strength to advocate for her during this entire time.  You can too!