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Severe restrictive lung disease

Our son is 17.  Severe Cerebral Palsy, sudden onset scolisos at puberty.  Spinal surgery at 13.  Increased scoliosis and crankshafting at 15 years.  At  16 diagnosed with severe restrictive lung disease.  Right lung "caged" between spine and severe ribcage  deformity.  Removal of hardware, "fixing" of severe ribcage rotation not possible.  CT scan shows right lung smaller than should be and breath sounds show very little movement.  Left lung enlarged with atelectasis noted in upper left lobe and lower left lobe.  Major distortion/displacement of organs.  Due to difficulty in moving secretions, sleep study showing de-sats down to 88, sats in the low 90's, breathing treatments ordered.  Was told that the breathing treatments were to optimize the function of the left lung but that it wasn't going to help the right lung.  Was told that if he were to get the flu, pneumonia or any respiratory issue the odds were not got in terms of him fighting it.  During spring allergies sats were low, heart rate consistently 110-120 with rarely getting down to 100. An oxygen concentration was ordered as well as portable tanks to be used as needed.  We are discovering that there is very little information on line with regards to the type of lung disease that our son has, and what information we do find similar is directed towards people who do not have cerebral palsy.

What is happening to the right lung?  If there is very little oxygen flow, if there is nothing he can do to increase the oxygen flow then do the alveoli slowly close down with resulting atelectasis/stiffening of the lung?  Every chest xray done we hear "it's really hard to see the right lung or get a clear picture due to it being so compressed by the spine, ribcage and hardware".  

Question regarding heart rate and oxygen sats.  Normally when his oxygen sats are low his heart rate is high.  This past week he started having low sats, sleeping during the day, "off" I guess, sporadic low grade temp but his heart rate is staying in the mid to high 80's and low 90's.  Trying to figure out why the heart rate would not be fast like it normally is with the low sat and if it means anything or nothing.

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If you are not already, please take your son to a pulmonary physician.  I am a respiratory therapist and take care of children with cerebral palsy.  We utilize different methods to assist with secretion mobilization and a pulmonary physician can recommend various methods that may help you after he/she assesses his current condition.  I hope that will help you.
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180749 tn?1443595232
August 17th, 2010
You have described the symptoms very well.
This pranayam breathing technique will help your son, send extra oxygen to the heart and both lungs, and in turn will improve the lung function.Do it everyday and come back to report  progress, so others may benefit.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
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