The Road to One

When you think of a child that has multiple medical conditions that you can't always see, you wonder how the diagnoses start to show up. The first six months of Mackenzie's life was a blur with a lot of unknowns. I had to force the doctor to give us a referral for a gastroenterologist. I don't understand why the doctors that are within the American healthcare system deny what you are asking of them. In my opinion, the parent or guardian should be able to request what they want within reason especially when it is to figure out why the patient isn't gaining weight or having other issues. In August of 2021, I got the referral that I had been asking for. This specialist will always have a special place in my heart because when we saw her she was like "yes, she has reflux but that is not the reason why she is not gaining weight." I was stunned but she said to go to pulmonology and they would be able to help me. 

    In September of 2021, we met with a pulmonologist. He listened to her, took his time answering my questions and really helped me understand what we are possibly looking at. He ordered 4 tests that needed to be completed within a timely fashion or as quick as our healthcare system allows. He ordered an airway evaluation, a swallow study, a bronchoscopy, and a sweat test because he was worried about Cystic Fibrosis due to what her lungs sounded like. Her airway evaluation was normal which was great and so was her sweat test. He decided when he spoke to Mackenzie's GI to turn it into a triple scope which included an endoscopy so that wasn't completed till February 2022.  She ended up getting sick in October, we did an EKG and found that she had an issue with her heart. Her QT interval was longer that it should have been. So, we got referred to a cardiologist. We did an echo and another EKG and found she had two tiny holes in her heart that never closed. This was interesting to me. She also had weird runs of tachycardia (high heart rate) but no explanation as to why. We continue to follow up with him because of my family history with hearts.

    In November, we did the swallow study. Now, a swallow study includes speech therapy to watch how she eats but also to watch her swallow and to see if it is effective. I had to bring foods that she liked and her formula. We mixed it with barium and tested different flows and thicknesses of the food. It was determined at that time that she was aspirating on every thickness and if we slowed the nipple flow of the bottle to the smallest size she was fine however, we couldn't feed her normally. We were told that if she continues to lose weight she will need an NG or Nasogastric tube like she had in the NICU. She also required feeding therapy which we started right away. They recommended twice a week therapy. In December, we went back for a follow up with GI and that is when we found out that she had lost more weight. GI decided to do a direct admission. At that time, we would attempt to get her triple scope completed and also place an NG tube. I got home after the news, let my work know, packed a bag, and let my work know the situation. 

    I finally got the call and we made our way up to the children's hospital. It was Covid times, so you had to wear a mask and they were testing all admissions for covid. Luckily, she was negative. The next morning, we got the NG tube placed, and I met with both the GI and General Peds team. They were concerned and we had to come up with a game plan for the admission. They brought in nutrition who recommended that we feed her with the bottle for 30 minutes and whatever is left we feed through the tube. That's exactly what we did. GI and General Peds agreed to bring ENT in to evaluate her throat. I met with the doctor from ENT and he was great. He believed she had a defect in her throat that could be causing the issue and wanted to make sure none of this was brain related either. He ordered a brain MRI which came back normal. We proceeded to do the scope with ENT and the endoscopy with GI. 

    It is the day of her procedure, I already signed anesthesia consent and ENT consent, I was waiting on the GI doctor who was doing the procedure. He is no where to be found. They called him and he said "oh I didn't realize it was happening today, I will be right there." He came over and talked to me and said my equipment isn't ready so we can't do this today. I was angry because we had just discussed doing it the day before. We proceeded with ENT who found that she indeed had a type 1 Laryngeal cleft that wouldn't bother her. However, due to silent aspiration that wasn't the case. He agreed it needed fixed but she needed to gain weight, have a better sleep study, and also take her tonsils and adenoids due to their size. When we got back up to the room, the general peds attending, the charge nurse, and someone from patient advocacy was in my room. They apologized for what happened, gave me free valet parking passes, food vouchers, etc. That GI doesn't work for this hospital anymore. Thank the lord for that. We were discharged the next day but because we had a GI appointment in February, the team wanted to make sure that we were followed up by someone and that ended up being one of the greatest doctors on her team. He was attentive to her care and really made sure we were finding the root issue to her problems. Her first birthday hit and we knew that the next year would be a bumpy ride.