Raphael is still on oxygen when sleeping otherwise his oxygen level maxes out at 85% and drops to the mid to low 70's frequently. The paediatricians say that they want him to be above 90-92%.
Early today we had a visit from a paediatric surgeon resident to have a quick chat about having a G-tube surgically placed via a laparotomy and also possibly performing a fundoplication. This initial consultation was mostly fact finding for the paediatric surgeon with some very basic information for us.
At 2:30 pm a session was arranged to give me an introduction to CPAP (Continuous Positive Air Pressure) and how we are going to introduce it to Raphael in the hope that it will overcome his obstructive sleep apnoeas. One thing which really stuck in my mind was when they said that applying CPAP for a child is a life altering decision becuase of the large amount of work involved in maintaining it at night through the alarms and potential issues that itself can cause. The meeting had our paediatrician, two intensivist consultants (intensive care doctors) and two home care nurses who are going to help us maintain this system long term.
Unfortunately (or one could argue fortunately) some of the equipment that was set aside for Raphael's CPAP was intercepted in an emergency for another child so we were not able to start CPAP on Raphael tonight. They pointed out that although CPAP is used widely, it is very difficult to find a mask that fits an infant well becuase the major market for these sorts of devices is for "fat men who drink too much".
We are planning to start the CPAP tomorrow at 3:00pm during Raphael's afternoon sleep.
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