Heath's Journey 4/26/10

mujul79's picture

Today Heath was seen by the Airo-digestive team. Basically that means we went to the clinic and ENT, GI and Airway saw him all in the same visit.

The Sleep Dr. had reported to them about his study and that was bases of this visit.

Results: they did not need to use his O2 that night. His Co2 levels are still to high and considered abnormal. They have been getting higher/worse as he gets older. So we have to rule out why that would be. Blood was drawn today and we are waiting on the results.

But get this

HEATH IS NO LONGER ON O2 TO SLEEP!!!! 17 months almost to the day from when he was first put on it!!!! Instead he is going to be on a Pulnucoa (sp) treatment every 24 hours to be given right before bed, as breathing treatments in the nebulizer. It is thought that the use of O2 for so much of his life is causing the high Co2 levels. We can use the o2 and Albuterol as needed. He will have another visit to check back with her before our move.

New Diagnoses is Allergy and Asthmatic. The new med should not only clear up his night time breathing issues but also help with some of the day time wheezing and shortness of breath when he plays to hard. This was all lengthly discussed after I shared my stress over his lack of wanting to keep on the O2 and how we have been using the nebulizer more often. He dose have days when he gets dusky colored still and I fight with him to keep it on. Best assumption is the "dusky wheezing days are asthmatic attacks" and I have been managing them at home with the equipment we already have, so avoiding ER trips and as a result a also missing the diagnosed before now other then the swelling the scope during surgery showed.

The GI Dr. Said he dose not have reflux and so he only gave me a name of a pedi GI Dr in Albany should after the move I want to take him to see someone. All his testing from the surgery came back normal.

ENT said since they just saw him after the surgery a few weeks ago that we did not need to see him today. Heath was given that all clear to move also!!!

He will get another chest x-ray soon, and see the Neurologist if we can. If not I can have both done after we move.

He will still be on the Alarm at night for awhile but that is it!!

So I am off to fill his new med so we can start the treatment tonight!!