Hematology appointment update

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. :/

Another ear infection AND a sinus infection

So, we went to the annual benefit and auction on Saturday for the kids school. While we were there, my sister babysat all of the kids overnight. The LOVE going to Auntie Rachel's house. She spoils them. As evidenced by the mounds of bows and ribbons that both girls came home with. And all the foods that she gave all of them. And when they were up late, I asked "why aren't they sleeping?" And she said "they said they don't want to." So, when she texted me at around 6:30 saying that Ben had a fever, it was a little worrying. He had *just* stopped his ear drops on Friday. I asked her to give him his tylenol and, if he needed it, his benadryl. She said he was kind of fussy, but he finally went to sleep around 11 pm. He apparently woke up at 6:30am and stayed up for a bit and then went back to sleep until around noon. When we got there on Sunday, he looked a bit better. But either way, I wanted him seen on Monday since his ears were draining again.

Monday 3/4, we took him to the pediatrician. She diagnosed him with an ear infection AND a sinus infection. The ear drops clearly were not cutting it, so we had an oral antibiotic to do. We did that with tylenol if needed. He seemed ok on Monday and Tuesday and Wednesday. Thursday night he had a really rough night and was screaming and crying until around 2 am. He was also having a little bit of trouble breathing, so I gave him a breathing treatment. That seemed to help. I then gave him a dose of benadryl and tylenol. That helped him get a little bit more sleep.

I had a dr appt for myself at 9 am on Friday 3/7, and Abby had her South Africa project. Joe took her in to school so that he could help her handle all of the delicate pieces our friend Tarryn let her borrow. He said she loved doing her project and loved showing everything off. After my appointment, I called the pediatrician to see if we could be seen again because Ben did not seem to be getting better and was in fact looking worse. We got an appointment for 10:20 that day. When we got there, his favorite nurse was waiting and ushered us back as soon as we signed in. The dr said that he know had a double ear infection and he wanted to change his ear drops and put him on a different antibiotic. He also referred us to pulmonology because Ben gets so many upper respiratory infections. I kind of think it's par for the course being immunosuppressed. But, whatever. I'll go along with it. The thinking is he may have reactive airway disease. Which would make any upper respiratory infection harder on him (as if it isn't hard enough, being immunosuppressed!) So, we got a prescription for a new antibiotic and went home. He has seemed the same still, since he has been on it. And both ears have been leaking the same amount. I did also call the ENT to see if this was normal. She siad that if this didn't help, we could come in and the ENT would suck the goop out of his ears and that might help kick the ear infection out. Hopefully we don't have to do that. Ben HATED that the last time he did it.

So, I did call the pulmonologist also. They are trying to coordinate it so that he sees the pulmonologist, at least this first time, at our cardiology appointment on the 26th. Otherwise, I will have to drive him to Arlington Heights on the 27th. Which is not horrible. But, if we can get it all done while we are in the city anyways, that would be preferable. We are hoping that the rest of the appointments can be done at CDH. They just didn't have any Thursday appointments anytime soon at CDH. The soonest they could get him in would have been May. So, we will see what this dr says, and see if we are adding another team to our ever growing list of teams that is following our little guy :)

Ready to go to Auntie Rachel's house

Breathing treatment

Not feeling so great with his ear infection