10/28/04

This week was up and down for Cass. He started breathing really shallow on Monday, like he was panting and taking about 100-105 breaths a minute. His heart rate was up about 180-190 and his SATS dropped into the 80's. Tuesday we went and saw his pediatrician and she sent us over to the radiologist to get a chest xray. It came out negative so we thought we would take him to his pulomonologist the next day, but that night the nurse from the pulmonology clinic called and said that his pulmonologist wanted us to take Cass to the ER. So we spent the evening at the ER where they took cultures of his trach and nose for RSV and pneumonia.They wanted to keep him over night to watch him but we have nurses and I didn't really want to lose the great nurses we have, and they really could do the same job watching him at home then at the hospital. They watch him even closer than if he were in the hospital. Wednesday his heart rate was high again this time up to 200-205 and his SATS dropped to 72%, with shallow breathing and no matter how much oxygen we gave him the SATS wouldn't go up. His whole body was bright red but he didn't have a temp. He was diurphretic and clamy. It was pretty scary because he was in pain and we couldn't do anything to help him. Thursday we spent all day at the doctors from 10 am to 4:30 pm. We first saw the GI doctor and they noticed granulation around the stoma of his feeding tube so they carterized it. That was painful for him. We saw the dietician next and adjusted his feeds and added an oil to his milk. Then we saw the pulmonologist where he set up a plan for us to follow if his heart rate should race like it did again. Hopefully it won't happen again. Cass has had a rough week and hopefully it'll calm down a bit here for him. He is up to 9lbs. 13 oz. today, gaining a good amount this week, but still considerably below the weight where he should be. Today he slept for most of the day, so I guess it has been a good day for him. I'll write more as we go along. Wednesday is the big day we talk to the genetics doctor, and I can hardly wait!!