Monday, July 11, 2011


Yesterday I spent most of the day at the hospital with Aaron. He seems to be coming out of his drug induced stupor and is showing signs of his original personality. I was able to be there for rounds and talked with the Attending and the rest of Aaron's team. I like this Attending, he makes me feel included in rounds and listens to what I have to say and takes it into the account when he decides what changes should be made. So far all of the cultures and blood tests have come back negative so they have stopped the antibiotics and pulled his IV's for now. The tests the Infectious Disease doctor ordered have also come back negative. He is still concerned about the elevated white count and is researching what else to test for. Aaron's calcium, alpa-phosphorus, and Vit. D levels in his bones look much better and should indicate that his bones are in the healing process. The only changes made were to take one vitamin supplement away and give him 19 mls at each feeding.

Aaron's echo also came back and is troubling. The nitric oxide does not seems to be working. His hypertension has not resolved and has gotten worse. The right side of his heart now has diminished pumping function. They treated him by turning up his flow on his oxygen and gave him lasiks in hopes he would start to come down on his oxygen needs. The lasiks helped with his swelling but neither worked in getting his O2 needs down. They turned his flow back down lower and stopped the lasiks. I spoke with the nurse practitioner later yesterday afternoon and together we went through all of Aaron's echo reports. We both agree that things are going in the wrong direction. I pointed out that Aaron was doing so much better after his first round of the nitric but that things changed. She said any kind of "stress" could send him back into the pulmonary hypertension. He went back on the nitric right when he had his infection and right before we discovered his fractures, so I would definitely consider him "under stress"! When we left last night her plan was to call the cardiologists at Primary Children's and have them come and see Aaron today. She said sometimes they like to do a consult over the phone but that she is going to insist they physically come and look at him and insist that he is a priority patient.

Last night Aaron was weighed and measured. He weighed 980 grams (2 lbs. 2 oz.), measured 31 cms, and his head circumference was 26 cm. The bigger Aaron gets the easier it is for him to be treated for his many ailments. With his flow turned up it is difficult for Aaron to continue to make progress eating orally. We did talk about that in rounds but until he can breath and eat at the same time he will continue to get his feeds pumped into his stomach. Our primary nurse was back on last night. We told her of all our concerns and frustrations over the last week. One nurse we had during this last week called her at home at 3:00 a.m. the night Aaron took his turn to get her opinion on what was going on. We love our primary nurses and know they are just as concerned about Aaron as we are.