A year has passed since I first compiled these web pages and many have written wanting to hear more of the story. In that time Gerard has certainly taught us more: the pleasure of throwing a toy above your head and shouting,, and the way in which you can look at a liquid amber leaf and fall in love with it, touching it with both fingers and toes and finally drawing in it for a hug, smiling and declaring "It's mine."
Shortly after I finished "Gerard's Story" we began to worry about another aspect of his condition. When he breathes he makes a noisy vocalic sound, and as he inhales his stomach and diaphragmatic mucscles contract inward. At first we though this was a slight narrowing in the airway, a condition he would outgrow. But just after his first birthday, we decided to schedule him for a bronchoscopy with a pulmonologist.
A bronch uses a tiny tube with a camera on it to look into the airway and see if there are any anomalies. Unfortunately in our case, it was discovered that both vocal chords had suffered severe damage. One was completely paralyzed and the other had just a tiny bit of function left. Surprisingly, his speech ability is fine, but the chords don't open far enough to give him an adequate airway when he inhales, so he gets short of breath and tired fairly quickly.
There is no cure for this condition and the pulmonologist suggested putting a trach in. I wanted to avoid this at all costs so we pondered for a full year on this topic and finally hit on what we hope to be the solution.
Right now his oxygen saturations measure in the low 80 (99-100 is normal). So if we could simply raise his sats by doing his next surgery we might be able to raise his energy level as well and thus avoid the trach. This is our theory and our hope , so we have scheduled Gerard for his Fontan completion surgery on October 14th, 1998 at UCSF.
Please keep us in your thoughts and prayers as we face this surgery and this outcome. Our beautiful son gives us such intense joy! Thanks for reading about us.
