Nearly a week ago, on Friday, March 7th Luke saw his pediatrician for a cough that had a bit of a wheeze associated with it. Following an exam, Luke was prescribed an albuterol inhaler. We discussed Luke's recent history that included croup, bronchiolitis (which required him being admitted for two days) as well as pneumonia and essentially how the residual effect was that Luke's airways were likely still a bit inflamed, causing them to have some restriction, hence him being placed on the albuterol. We talked about how Luke would need to be seen again if his symptoms changed or if he still needed the albuterol in five days or if he needed it more than three times a day for two days straight.
Friday night was miserable..... he cried and cried and cried and neither Dustin nor I got much sleep. Luke had physical therapy at 10 AM Saturday morning and he wasn't a very willing participant, maybe only completing about half of what was planned for him. By 11:30, we decided he needed to be seen again. Our pediatrician's office sees patients on Saturdays, but our doctor was off and the other schedules were full so the nurse suggested we come in to Express Care. I wasn't interested in Express Care so we packed up a few bags and drove to Cleveland to the Pediatric ER at Fairview Hospital. By the time we got to Fairview, Luke's temp had spiked at 104.6, he was a bit tachypnic at about 65 breaths per minute (vs normal at 40-45) and he had an elevated heart rate... this combined with his history led the doctor to sharing that we would be admitted before he'd even completed an exam or ordered any tests. We went through the motions of swabbing for RSV, completing another chest x-ray and drawing quite a few labs. The RSV was negative, but the chest films showed a medium sized opaque spot on one of the lobes of Luke's right lung, which told us that his pneumonia was back. Additionally one of the labs that the doctor drew was to determine Luke's NTP or Natriuretic Peptide. We've never had his NTP evaluated so it wasn't something that I was familiar with, but it came back elevated, which the ER doctor suggested was a sign of congestive heart failure. This led to us being transported to the Clinic's Main Campus and earning a room in the pediatric ICU. Before the squad came to get us, the ER nurse attempted to start Luke's IV fluid and discovered that his vein had blown at some point after the labs had been drawn so the site we were using in his right arm was no longer functional, which meant another poke in his left arm to start the IV. The squad came for us and off we went towards downtown.
Once in the PICU, we got settled some and the doctors started to flow in... residents, hospitalists, nurses, nurse managers, cardiologists, etc. They confirmed the pneumonia and suggested that they thought Luke had a virus overlaid on top of it, which made him look and feel even worse. We talked about the elevated NTP and learned that the cardiologist wasn't too concerned about it... in his words "We know that Luke has an element of heart failure because of his AV Canal defect so of course his NTP is elevated, that's why we've never drawn it on him." He went on to say however that the recurrent respiratory infections were troubling to him and made him wonder if Luke's heart function was worse than it's been in the past so he ordered an echocardiogram that was eventually performed on Monday. We started IV antibiotics (Ceftriaxone) and Luke continued to receive IV fluid as he had mainly gone off milk and solids by that point and on Sunday evening, we were moved from the PICU to the general pediatric floor. Once on general peds, the doctors seemed concerned that we were giving too much fluid via the IV.... individuals with heart disease can get fluid build up as their body sometimes has a hard time disposing of it so we slowed down on the fluids even though Luke's oral fluid intake was still decreased. Monday early afternoon Luke had his echo and we were discharged late Monday afternoon with oral augmenten to treat the pneumonia. We are still awaiting the results of his echo.
Yesterday was our first full day home and it was a little rough. Luke still isn't real interested in eating... he full out refuses solids and only takes milk about a half ounce at a time. Typically his fluid intake is about 25-30 ounces per day and by late afternoon yesterday he had only taken 11 ounces. As evening rolled around, we got another 5 in him and then another 4 before bed so I was satisfied with 20 ounces although I'd be lying to say it wasn't a chore to get him to eat. I hate taking time off work, but I decided to stay home again today to observe him and make sure he gets enough fluid.