Her doctors here are able to contact her doctors at Hopkins and actually work very close with her old Pulmonary doctor from Hopkins as he travels here every few months and will be here again this summer. They were able to view her last report from October 2011 which showed she only had evidence of sleep apnea with a Respiratory Disturbance Index (RDI) of 4.6 events per hour. On December 2013 (2 years later) she showed Severe Obstructive Sleep Apnea with a RDI of 30.8 events per hour.
It might be easier to bullet point some of the highlights. It's a 3 page report that I'm taking the notes from. This test has kept me up for the 4 nights now.
- total recording of the sleep study 515 minutes.
- total time Haven actually slept 276 minutes (due to choking herself awake constantly as you will see)
- total sleep time in stage 1 - 9.6%
- total sleep time in stage 2 - 73.8%
- total sleep time in stage 3 - 15.7%
- total sleep time in REM - 0.9%
- She slept for 244 minutes on her left side
- during 276 minutes of sleep she woke up 62 times at about 13.5 times per hour
- no evidence of seizures
- during her 276 minutes of sleep she had 140 obstructive events resulting in about 30.8 events per hour
- central apneas at 0 per hour (at least this is good news)
- mixed apneas at 0 per hour
- loud snoring throughout testing and nasal pressure/end tidal CO2 poor during most of study
- notes from doctor: respiratory events may be underestimated due to frequent episodic oxyhemoglobin desaturations
- during 276 minutes of sleep Haven had 216 desaturations (drop in SpO2)
- desaturation average of 46.9 per hour
- SpO2 desats during sleep down to 70.9%
- average respiratory rate rage 14 - 26 bpm
- max end tidal CO2 in NREM at 108 mmHg (98% of sleep time)
- max end tidal CO2 in REM at 45 mmHg (2% of sleep time)
- capillary blood gas at beginning of study: PH 7.44, pCO2 of 39
- capillary blood gas at end of study: PH of 7.39, pCO2 of 38
- regular sinus rhythm
- minimum resting heart rate 66.7
- maximum resting heart rate 168.2
OFFICIALLY DIAGNOSED ON FEBRUARY 19TH:
SEVERE OBSTRUCTIVE SLEEP APNEA
SEVERE EPISODIC HYPOXEMIA
She is currently on oxygen, C-pap machine, and pulse oximeter at home.
Labs March 8th.
Surgery is March 10th for tonsil, adenoids, and brochoscopy.
IVIG on April 5th.
April 10th follow up from surgery.
Endocrine on May 1st.
May 3rd labs.
Repeat sleep study on May 3rd.
May 22nd Pulmonary follow up.
Immunology follow up June.
Cardiology will follow up every 6 months unless Pulmonary requests sooner.