After dropping Ben off at school I headed up for my hour of time with Aaron. Unfortunately I didn't get much time to spend with him because I was talking with doctors, n.p.'s, and nurses the entire time. Aaron had an echo yesterday and the results were predominantly left to right shunting and small to moderate PDA. They did not mention anything about his paracardial infusion or his VSD or anything about his hypertension so I assume they are not an issue at this time.
Just after I got there and spoke with the n.p. a resident from Infectious Disease from Primary's came to see me. She wanted another history of the fam (did this twice already) and then she examined Aaron and then said she would be back shortly with the Attending. 15 minutes later they came back with 2 more (4 total). I spoke with the I.D. Attending who agrees with the cardio guys that Aaron certainly has an infection or virus of some kind. He thinks its in his abdomen somewhere and wants a ct scan. A ct scan would mean a transfer to Primary's and contrast. Two things Aaron can not do at this time in his current state. So an ultrasound was ordered instead, both of his gut and his head which will be done this morning. He is also testing for CMV a virus common in IUGR babies although he doesn't think that is what he has. We talked about all the septic work ups Aaron has had and agreed with me that most likely Aaron has been sick for a lot longer than we had originally thought and that all those times he started and stopped antibiotics was just masking the problem and making thins worse. He changed one of his medications to one that focuses on his gut and recommended that we do not stop treatment at the 21 day mark that was originally planned. After all that he asked if I had any questions and then said he or someone from ID would be over to check on Aaron everyday until he was better. Love it, didn't even have to ask this time!
Today is our care conference with the staff in preparation for the Attending change tomorrow. The nurses and I were joking about how to safeguard Aaron's flolan so no one is tempted to stop it. We have 3 official primary nurses and about 4 more that are regulars as well (they would be our primaries too if we were allowed to have more but they get around that by requesting him). We know at least one will be at the conference if not more as they have said they want to be there too. We really do appreciate all they do for Aaron and for the care and love they give him. I know he is well cared for while I'm not there.
Ronny went in last night to read to him. I stayed home to help with math homework and get the kids to bed. Aaron is very sick but seems to be doing a little better. His chest films are looking better. They have turned his mean down and his hertz up on his respirator and he is tolerating his "cares" so much better these days. He has received a lot of blood in the last couple days so he is very pink. It seems that getting blood helps his kidneys profuse better and we get more urine in his diaper and out his catheter, still not enough, but better none the less.
Tuesday, August 09, 2011
Posted by bjarnason family at 7:25 AM