Last week, Jesse's oxygen was once again low. Wednesday night was the worst, with little sleep and saturations in the 80's while on 1 1/2 liters. Another trip to the doctor on Thursday didn't provide any certain answers, but we started another 4 day course of steroids (Prednisolone). And by Sunday he was doing great! I asked the cardiologist what it meant that he responds to the steroids, and she said it was "restrictive airway disease", which probably does mean asthma. I would like to take him to see a pulmonologist, but don't see any reason while he is doing great, so I will wait for the next episode of low saturations.
We are going to Children's hospital on Thursday and Friday for a few appointments: a hearing test, to see a pediatrician in the Special Care Clinic, and for an echo and visit in the pulmonary hypertension clinic. Then Friday night, Chad & I are going with the 3 older boys to a Rockies baseball game - with fireworks!
We are looking forward to, and planning for, Jesse's first birthday on September 26th. It is hard to believe he is going to a year old.
Kristan
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