Peter - Carepage - April 3rd, 2008

OK....so quick Peter update. Yesterday he had his sedated hearing test. He didn't like the taste of the medicine, but after screaming for about 10 minutes was out like a light. The good news is that they told John that Peter passed his hearing test. Yeah! I am hoping to talk to the doctor because she told John that Peter was borderline for mid-range.....I don't know what that means. But, he passed - and that is great! The not-so-good part is that they were unhappy with Peter's saturation levels. He is normally on 1/2 liter of oxygen. After they sedated him his sats dropped into the 70's. They upped his oxygen to 4 liters (yes - FOUR!!) and still could not get his saturations up. The doctor told John she believes Peter de-sats when he is sleeping and we don't know it. Of course that freaked me out so I was up from midnight to 2am partially pacing around the house because my stress level was through the roof....about a lot of things, so this was just one more thing on top of all the other 20 million things racing through my head. Today John decided to check Peter's sats at home. He was fine and after he fell asleep he actually was at 100%. Yeah but also hmmmm.....makes you wonder. Now, my theory is that maybe he has sleep apnea or something, but at home he sleeps on his tummy so his tongue can't drop back. But during the test he was on his back. I don't know! The doctor said she was calling our cardiologist but we didn't get any calls today so not sure what the next step is - but will keep you posted. On a good side Peter is showing a tiny bit of improvement in his appetite - so hoping it will continue to get better. He has his PT assessment in Denver on Friday - looking forward to that. We also need to get his eye appointment set up. Other than that Peter really has (knock on wood) been quite healthy!! Like I mentioned his next echo is on April 28th - so anxious for the appointment and hopeful that it will be positive. It will be good to meet with Dr. Duster again and really get his perspective on all that is going on. Thank you for your prayers and on-going support - we reaaaaaaally appreciate it! HUGS! catherine (PS. promise to get new pictures updated very soon!)