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A father’s journal day one
by: jerry
Posted on: 02-05-2006 @ 02:51 pm

Today is the first day of my public journal.

I hope the entries within convey to the readers my Questions, Fears, Concerns, Joys, Pride, Support and Thanks of being a Father and Husband of effected family members with Myotonic Dystrophy.


On Friday, a medical equipment company delivered a SpO2 monitoring unit for my son who is 18 months old. The unit was proscribed by one of his doctors because of concerns raised 2 weeks ago when my son was admitted to the local hospital for breathing difficulties brought on by a cold. While in the hospital, we discovered that my son was dropping his blood oxygen levels when he slept. A one-day admittance to the hospital for observations by his local pediatrician to put a father at ease turned in to a 4-day stay so that my son could be put on oxygen while he slept.

For those of you who are not familiar with a SpO2 monitor, it is a box about the size of a shoebox with lights, buttons, illuminated ever-changing graph with buzzers and beeps.  The unit is placed in an area close to the person being monitored so a lead with a little red light and sensor is clipped or taped usually to a finger or toe for the monitoring of the blood oxygen level and heart rate or Pulse.

For my son the Oxygen alarm settings are 100% for the high level and 91% low level.
The Pulse alarm settings are 230 for a high level and 80 for a low level.
During waking hours, my son’s averages are 97% for Oxygen and 135 for Pulse.
Both of the waking hour’s readings are good and my son does not require daytime monitoring.
Sleeping time is another story,
The average sleeping Oxygen level is 92-93% with an average Pulse of 100.


The first night Friday, was full of lessons for mom, dad and son. We found out that the best-tolerated spot for the probe is on the big toe taped up and then a sock over the foot and probe cable to help keep it in place and from being caught by the other foot, dad’s head or mom’s elbow, yes our son is sleeping with us. That story is for another time.


Over the course of the night, the loud and obnoxious alarm sounded 18 times. A couple times for a lead off or falling off. The times that showed a real alarm, with oxygen levels of 85% or less was eye opening. We were told to take the baby to the emergency room if the level was less then 92% but every time the alarm went off I would wake the baby and the level would come back up to around 95% in a mater of 5-10 seconds. Needles to say Friday night was sleepless and stress full.

Saturday night was basically the same as Friday night. Except with no leads falling off, the sock works.


Last updated on 02-08-2006 @ 01:15 pm


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