Brennen Update

Today was Brennen's semi-annual MDA Clinic visit at Lucille Packard. Naturally, one of the topics was whether he should transition to the adult clinic, since he's going to be 24. The decision was no, because even though his cardiologist and his ENT are on the adult side, his pulmonologist is still on the pediatric side.

The MDA Clinic is a gateway to other services as they are needed. For example, the Clinic first pulled in the pulmonologist when Brennen showed symptoms of sleep apnea. The Clinic also helped us get the genetic testing done to show that our daughter Shannon is not a carrier of DMD.

So, aside from Brennen getting older, the other topics we brought up today were:

• Might prednisone help Brennen? (While useful earlier in DMD's progression, the side effects aren't worth it during later stages of DMD)
• How can we find out about home nursing care should it be needed in the future? (The MDA rep gave us a contact)
• Are Brennen's "out of it" feelings consistent with a sinus infection, since that is how it is being treated? (Yes)
  
• Who should we talk to about Brennen's ventilator alarm problems? (Start with the respiratory therapist)

Ten out of the last 12 nights have been hellish because of ventilator alarms. Neither Brennen, nor Tracy and I, are sleeping well due to the eight to ten alarms a night, so this was really the most important topic. I followed up with both the repiratory therapist and the pulmonologist about this after the Clinic, and we discussed CPAP masks and a new one will be delivered soon.

The best news today was that Brennen's gained another 1.5 pounds and his blood gasses looked great. About as good as they have looked for years. So something's working.