Sometimes I think James understands more than we think he does. Last week Stacy was told that we might be losing nursing care because James has been so healthy. James must have overheard mommy and daddy talking about it and decided that he would show them.
Shortly after midnight on Sunday morning he started breathing heavy and it sounded like he had something in his throat. His pulse ox showed his heartrate was almost 200 and his sats were in the low 90s. Stacy took his temperature and it was 104.5 so she put a call into the pediatrician who recommended Tylenol to bring the fever down. This worked pretty quick. By 1:30 am his fever was down to 103.5 and by 3:30 am it was 102.5. We gave him a few breathing treatments throughout the day to help with his sats and try to breakup whatever was stuck in his throat. And suctioning…lots of suctioning. We put him to bed Sunday night on oxygen to keep him comfortable while sleeping.
He slept until about 1:30 am Monday morning when he woke up all upset. Stacy got up to give him a good suctioning and did the best she could to comfort him. Another call into the pediatrician at 6:30 am. He told her to call the office at 9 to make an appointment to bring James in. If we didn’t feel like James was stable enough to call him back and they’d discuss other plans. Stacy and debated if we should just take him to the ER or wait until 9 to call the pediatrician’s office. The problem we have is that the pediatrician’s office is attached to the hospital that we normally take James to and it’s 30 to 45 minutes away. So either way—whether we take James to the pediatrician or to the ER—we’re going to the same place. We do have a hospital that is closer, but they don’t know James and they don’t have a Children’s Hospital–yet. We felt that he was stable enough to travel so we took him to the pediatrician. Fortunately, he didn’t feel he was bad enough to have him admitted to the hospital, and prescribed a round of antibiotics.
Tuesday, we continued with breathing treatments, Motrin when needed to bring the fever down, and the antibiotics. The problem we had with the antibiotics was that it was a pill. Because James is tube fed, this required us to crush the pill, put it into a syringe, draw up some water, and give it to James through his g-tube. If the pill wasn’t crushed enough, it would get stuck in the g-tube. Stacy called the pediatrician and he prescribed the liquid version of the antibiotic. Much better! One thing we need to remember…when James starts the keto diet, we need to be cautious about medications and inform the nutritionist about any med changes or additions. Everything that goes into James’ body need to be taken into account once we start the diet. The diet is designed to put the body into a state of ketosis so everything that is put into the body needs to be accounted for.
Wednesday was pretty much a repeat of Tuesday. Thursday he seemed to be doing better. And by yesterday we knew he was doing better. How did we know? His spasms came back. Between Sunday and Thursday we don’t recall him having a single spasm or twitch. Yesterday was the first time in almost a week that he had them. We’re glad he’s feeling better, but it was nice to not have to helplessly watch him have uncontrollable spasms. He’s supposed to start the keto diet on the 23rd so hopefully that will finally rid him of these damn spasms once and for all!
