So for the past week I had been telling myself that I needed to update the blog. I have now found the time to do so...
Alexander was discharged last Wednesday. He seemed to be doing well, just a bit sore. Over the next few days of being home, Alexander began to have off and on fevers ranging from 99.1-100.3, with occasional higher fevers (102.4). Once the weekend came, Alexander began coughing and his cough soon became congested. By Sunday afternoon, he was not our happy Superman. So Monday morning, I took him to his Pediatrican who seemed very worried after hearing Alexander's cough and had him swabbed for RSV and the Flu. Both tests came back negative. She still wasn't convinced and told us to keep a close eye on him and bring him back the next day. The next day, his cough and fevers were still present and so his peditriacn requested a chest x-ray, to rule out pneumonia. This also came back negative. Still not trusting Alexander, she suggested we take him to see his cardiologist and to have oxygen ready if needed. Tuesday night Alexander woke up coughing and crying. After an hour of crying and a breathing treatment, Alexander relaxed and went to sleep. Yesterday (1 week later from being discharged), we took a trip to CHLA to see his cardiologist. Tests were run and his new pacemaker was interrogated, with everything looking fantastic! No infection at the site of his pacemaker, his heart looked great, his white blood cell count was normal (no bacteria infections present), and his oxygen saturation were acceptable (77 range). By 8 pm last night, Alexander was irritable and coughing. After his bath and breathing treatment, he quickly feel asleep. By 9 pm, I hooked Alexander up to his pulse ox machine to double check that all looked good (something I have been doing regularly), and bam! alarms were going off because his oxygen saturations were 55! I thought, "what the heck? that can't be right". Wes quickly came in to see what was going on and thought the same thing because he had normal coloring, no hint of blue. We tried with two other senser cables to see if in fact, that was the reading, and it was! So we put oxygen on him and called his cardiologist. She was shocked as much as we were and suggested that we take him to CHLA to make sure. We spent 4 hours in the ER with Alexander while test were run and then he was admitted to CV Acute. This morning more cultures were taken and and learned that he DOES have RSV. :( He is currently on 1/2 a liter of oxygen to keep his sats in the accpetable range (75-85) and the plan is to begin to ween him from the oxygen. He also had a seizure this morning :( but the doctors aren't concerned because it is common for kiddos/people with epilepsy to have a seizure when sick. I didn't like hearing that but I'm okay with the fact that at least it is common when epileptic patients get sick. What's one more thing to worry about, right!? ugh!
So for now we watch and wait. We watch to make sure his fevers don't continue to climb and wait for them to stop occurring. We watch for an epileptic episodes and watch that his oxygen saturations don't drop. We aren't sure how long he will be in the hospital but we are hoping and praying it isn't very long and he can start feeling like himself again. Thanks for your positive thoughts and prayers and if you or your kiddo is sick, PLEASE keep them home. You just don't know who will be affected by it or how it will affect them. <3
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