Ben had his hematology appointment on Thursday. He is still pretty anemic. He was taking 2 ml of iron twice a day. He had been at this dose of iron for over a year. I don't remember the hematologist ever changing it. So, even though he has gained weight, it has always stayed the same. She commented on him making good weight gain, but still being pretty anemic. He is in the 25th percentile for weight still, and his pediatrician is ok with that because he is in his own curve, and not dropping percentiles. She asked how he eats and how his activity level is. I said he eats pretty much everything we put in front of him and is pretty active. So, that reassured her. She also mentioned that his anemia was most likely due to the cellcept and prograf. And there is not much we can do about those. She wasn't going to change anything. But, then I commented, "so, even though he is still anemic, you don't want to make any changes?" She looked at his weight and the dose of iron he is on and said, "we can go up to 5.5 ml of iron a day. We will see if that helps. So you can do 2.5 ml in the morning and 3 in the evening." My OCD mind about his meds was immediately like "well that is going to mess up our meds bin! But ok." I mean if it helps him, then fine. Joe decided we would do 2.75 a day and that won't mess up the meds bin at all. Much better. Of course, I can not get the iron at exactly 2.75, so he will just draw that up. Anyways, it was a bit disconcerting that I was the one that had to say anything about adjusting the meds, but we left the appointment and made his next one for 6 months later. They wanted us to do labs that day, but since we have cardiology next Wednesday, they were fine with us waiting until then and only being poked once. Hopefully he will have even made some improvements in his iron levels by then. Ben and Klara were both excited because Ben's favorite nurse at New Lenox, J, gave them both gifts. A car that has sounds and lights for Ben. And a bow and arrow set for Klara, and one for Abby. J explained they only had a bunch of boyish toys. I told her Klara and Abby would both love them. They don't care. And they do. They have been playing with them every day. And Ben has been playing with his car too!
So, as if Ben wasn't anemic enough, this morning he woke up at 7:45 and just in a quiet voice said, from his crib, "mommy? daddy?" I went to get him and he had blood everywhere! He apparently had a bloody nose. I don't know if he picked his nose, knocked his nose, or something else, but blood was clearly coming out of his nose. I got him cleaned up and saw that it was still all over his crib. It was a lot of blood. Because of his aspirin, he can bleed a lot more than other people would. Later on in the day, his nose started bleeding again. We are not sure why, but, I took a picture of a sort of bruised line on his cheek by his nose. Joe is going to show the cardiologist at his appointment on Wednesday.
So, those are our updates for now. I am hoping that the nosebleed is nothing to worry about and was just a freak thing. Nothing cardiac related. And I am also hoping the increase in iron helps. Cardiology has mentioned doing IV iron infusions if the oral iron doesn't help. THAT does not sound pleasant. :/
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