July 27, 2006

We wanted to make an update to let everyone know what has gone on over the past couple of days. The infectious disease doctor has visited Zach each day this week. For the first few days Zach was still acting very sick. He had a fever, his oxygen was requirements were high (sometimes 100%), he looked uncomfortable and we could just tell he was not feeling well. The doctors had to use a lot of sedation and pain medication just so he could calm down enough to get some rest. On Wednesday night after a long, hard day Zach's nurse noticed something "oozing" from his G-tube site. She called the surgeon who said to stop feeds and that he would be in the next day to take a look. After they stopped the feeds they started IV nourishment and put a vacuum tube to his stomach to drain the contents. Fortunately Zach has been much happier ever since. He is alert and content and his oxygen requirements have gone down (he was on 40% when we left today). Unfortunately, we don't know what is causing the problem with his feeds. So, there's still a lot to figure out and as always we'll see what tomorrow brings. Zach's condition is complex and it's hard to know which changes bring results, but it's sure nice to see him with a content look about him again.

One thing that we haven't mentioned before is that Zach has developed some pulmonary hypertension. Because he has had high blood pressure in his lungs it has caused his heart to work harder and therefore become enlarged. We were aware that he was at risk for this condition due to his chronic lung disease, but were hoping that the trach would help with his ventilation enough to avoid it. Because his most recent echocardiogram showed enlargement of his heart they've started him on a new medication called Viagra. Yes, you read it right. Believe it or not this medication works to treat pulmonary hypertension as it dialates the blood vessels in the lungs and makes it easier to pump blood to them. He will have a follow-up echocardiogram next week to see if the medication is helping.

If Zach stays well enough he'll have a nice treat on Sunday. The hospital staff has planned a 6 month birthday party for him. We get to wheel his crib down the hall to a room where we can celebrate! We may even get to open the window and let him feel the outside breeze for the first time. :)

We're certainly glad that things are looking better today than they were earlier in the week. We still have many things to discover. Thanks to all of you for your support.