Joy is coming. This is a story of our hard times, but this is not a sad story. Livi has life, an entire village of people who light up at her existence. We were navigating the unknown. Searching the internet, and finding no black and white answer. There were dilemmas, there were gray areas. But joy was coming, laughter would again fill our home. The story is not over, Livi is not finished.
This update is mostly medical facts and test results. Our week long hospital stay was very hard on our family, but I have made it a shorter and easier read by sharing test results so we can continue on.
(Continued…)
After a few minutes Livi did wake, her color returned. We were in the car driving our baby to help. We started at our local hospital and soon after reading her chart, remember the big red stamp I envisioned on the front “genetic abnormality”, we were sent to a hospital that was better prepared for what Livi might (or might not) need. Ochsners in New Orleans, two hours away from home.
This time was not a one hour appointment but a time frame we did not know. Livi was quickly admitted. The workup began; Livi had a brain MRI, complete abdominal ultrasound, swallow study, blood work for respiratory infections, EKG, laryngoscopy, and a sleep study was ordered. This is what our entire visit consisted of, but it did not happen quickly. One test was done, then we waited for results. Waited for the doctor to inform us of the results, and continue to another test. This is where our life started to turn to light, joy was coming. A hospital stay was bringing joy? Oh the uncertainty was still there, but results were coming in one after the next. A full work up was in order. Our geneticist had started us seeing several specialist, but being admitted in the hospital it was all happening at once. And test by test there were obstacles to overcome, but the news was not devastating.
Brain MRI- a limited MRI was completed without contrast- within normal limits. She will have another MRI at one year of age, he did not want to sedate her with her unknown cause of airway obstruction (turning blue, not breathing). But what was seen was “normal”. Her corpus callosum, the part that “appeared missing” in the brain ultrasound earlier on was there, thin, but present! Joy.
Complete abdominal ultrasound- her gallbladder was measuring small, but the rest (pancreas, aorta, inferior vena cava, biliary system, liver, kidneys, spleen) all were unremarkable or normal in size. Joy.
Swallow study- using barium a video fluoroscopic swallowing exam was completed because Livi had nasopharyngeal reflux, unable to drink enough, not gaining sufficient weight. The results were she does have an uncoordinated suck, swallow, breathe movement. But, she protected her airway when she did drink! Speech therapy was recommended to work on coordination. Joy.
Bloodwork for respiratory infections- All negative. Joy.
EKG- normal results. Joy.
Laryngoscopy by ENT- extreme swelling present, Laryngomalacia once again confirmed. Recommended airway surgery- Supraglottoplasty. ENT stated “I am not sure if it will help her” and wanted to see her in clinic with different equipment to determine treatment.
Her current diagnosis was called a BRUE. Brief resolved unexplained episode. Livi was connected to a pulse oximeter since the minute she arrived, every time Livi fell asleep she would desat. Sometimes as low as the 60’s-70’s. Something was there, they could see the difficulty to breathe. Something was happening. But result after result came back hopeful. Livi’s list of diagnoses were ASD (cardiology would follow up in 1 year), genetic abnormality, congenital hypotonia (the low tone discussed at birth was still present), cyanosis, gastroesophageal reflux disease, global developmental delay, Laryngomalacia, microcephaly, malnutrition, and oropharyngeal dysphasia. Whew, what a list!
The main takeaway is Livi needs oxygen when she sleeps. She either has central or obstructed sleep apnea. Livi was now being closely followed by ENT and a pulmonologist. We were setting a date for a sleep study and seeking more clarification with ENT. We begged to go home, after all of the tests were finished. Results were in, there was nothing more to do but let her sleep on oxygen. Our 3 year old needed her routine back, needed her family back. Livi was stable on oxygen. My husband being medical was the winning ticket, they felt comfortable with discharging us with home health supplies.
The lead doctor contacted our pediatrician who has a love for complex care patients and informed her of Livi’s hospital stay. After their conversation the lead doctor was more confident in our discharge. I cannot express the gratitude I have for our pediatrician. She became essential in Livi’s progress.
This hospital discharge would begin our management of care at home. Home health sent us home with a main oxygen unit, a portable oxygen unit, suction, and a medical grade pulse oximeter machine. Our bedroom very quickly became a hospital room. But for the first time in her life, Livi was sleeping more peaceful. With oxygen, she was breathing at night. If she obstructed the pulse oximeter machine (very loudly) alarms. For the first time in months, we all had a good nights rest. Our family was together again, each night we closed our eyes we were not scared of morning coming. Livi was with us, and she’s bringing joy.
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