Sunday, July 12, 2009
Hi everyone,Just a quick note to let you all know what is going on with Tomas: 1. His recovery from the surgery is going very well. He can eat and digest his food with few problems. He is having other feeding issues which I will get to in a moment. 2. He is still having trouble keeping his platelet count up. The hematologist still thinks it is an antibody induced auto-immune response and that it will resolve itself - anywhere from a few days to 3 months. This would require him to stay in the hospital only if his count remains very low. 3. He was being fed from a bottle and doing very well until Sunday evening when he began to struggle after the first few milliliters. He would stop swallowing and leave the milk in his mouth and start to choke. He is now being fed through the tube that goes directly into his stomach (inserted during his surgery). I'm not sure how long before they try the bottle again. 4. He was off his oxygen monitor until yesterday when again he began to struggle and not breath as well as he had been. He is back on the monitor and he has the nose tube for extra oxygen back. 5. After a blood screening today we were told he has a condition called transient mylo-proliferation. This is a blood disorder in the leukemia family that is strongly associated with babies who have Down's Syndrome and particularly those with the duodenal atresia (intestinal blockage that he needed surgery for). It should resolve itself but will require monitoring to make sure it goes away. Having this transient condition puts him at greater risk for developing acute leukemia later in childhood. If he should develop symptoms of acute leukemia (liver, kidney or heart problems) then he would need a small dose of chemotherapy. 6. He had another echocardiogram on his heart today and I am still waiting to hear the results. We already know he has two small holes in his heart, but last we heard they were tiny enough not to need intervention unless they begin to cause him trouble. 7. He can come home when he can eat well, maintain his oxygen level, and has a reasonable sustained platelet count. I'm attaching some pictures I took today. He looked much better than he did yesterday. The rest of my family is holding up well. The girls are excited when they get to visit him and they got to hold his bottle a few days ago before he was taken off. Mike and I are really learning to take things one day at a time and just waiting to be able to take him home. I am sorry I can not answer all your emails personally, I really do love getting them. Knowing that you are lifting my family up in your prayers makes me grateful that I know each and every one of you.