Peter - Carepage - May 27th, 2008

The last couple of weeks Peter has been through a lot....so honestly I am glad to have a break until the 9th for the next cardio appointment. Peter's 12 month check up went fine except he is officially a peanut. On the "typical" kids chart he is so low I think it would be a negative percentile if that is possible - but on the DS growth chart he comes in around the 35th or 40th percentile with his 17lbs 9oz (approx) weight. He is just over 27 inches tall. Dr. McCaffery seemed pleased with him - but one thing I have learned is that no two doctors see Peter and see the same thing....that will make sense a little lower down. Last week we had the swallow test and that was not a pleasant experience....they pinned his arms behind his body, strapped him to a board, lay him on his side and expected him to drink a chalk like substance while they took x-rays. By the fact that we waited over an hour for our appt, you can imagine Peter's attitude....he was not a happy camper. Being the trooper he is he drank enough for a few good pictures and then was out of there wanting to be snuggled and sung to. Today we had the pulmonologist appt in Denver that pulled it all together....Peter's lungs are not in good shape. Especially the top right lobe that collapsed during his heart surgery. Based on the swallow test and where the lungs appear to be the most "cloudy" it is evident Peter is aspirating. That means that "food" is getting in his lungs. While commonly this is due to severe gastric reflux, in kids with DS it is often due to low muscle tone, larger tongues, etc. So instead of coming out of the stomach and into the lungs - it is directly into the lungs at the time he is eating. So, think of a time you've drunk something and it "goes down the wrong way"...that horrible feeling and need to cough it out - Peter has that pretty much with every feed. No wonder we've had feeding issues! In order to avoid aspiration we need to thicken Peter's liquids to a consistency closer to puree food - basically a LOT of rice cereal to the milk. The pulmonologist we saw (Dr. Wagner instead of Dr. Abmen) was actually more concerned about Peter's weight than his lungs - "failure to thrive" basically. While Peter is active and moving around, he isn't getting enough calories to sustain growth and it could be due to the lung damage or his overall health. We hope that the thickening of the milk will serve two purposes - to avoid aspiration and to help him gain weight. He did say that Peter would do better at sea level than here in Colorado - especially Colorado Springs - but given some of these other issues moving would not be the instant cure. If we have the opportunity to move we should jump on it, but if not wait another year and see how Peter progresses. He did say Peter would need to be on oxygen at least until he is two (another year of tubes!) and at that time we should be able to determine how well or not Peter will do in the altitude. There is no doubt sea level would be better, but until we get rid of the aspiration, get the lungs healthier, and Peter gaining weight - we can't tell how much better sea level would be. In addition to thickening the milk he has ordered an inhaler and he wants us to give Peter inhalations twice a day to help the lungs. They want us back in 3 months at TCH to re-evaluate his lungs and hopefully see improvements. I know this sounds like a downer (no pun intended) it is actually good...while a bit overwhelmed I finally feel empowered to do something to help Peter. We actually can do something that will improve his lungs and hopefully his pulmonary hypertension. They are still optimistic that if we can resolve some of these other issues his pulmonary pressures will improve. And while he will always be reactive and prone to PH, he can hopefully one day be off oxygen and lead a normal life...play soccer, go on sleep overs or take a date to a movie! Must run help John with the kids! Love, catherine