Cardiology and kidney clinic

Ben's favorite nurse!

Ben had his cardiology and kidney clinic on Weds 11/28. He is doing amazingly well. Kidney decided to drop his Cytra down to only one time a day, which is great because he hates that stuff, and it gives him diarrhea. The kidney doctor even saw evidence of that during clinic, so maybe now he believes it a little more. :)

Cardiology said he is doing very well. He is up to 21 lbs and 29 1/2 inches. The only minor problem is, he can't keep his Prograf levels up. His trough level they wanted him at used to be 10-12. He was consistently at about 8 or 9. But, since he is so close to a year post transplant and is doing well, they decided to drop it down to 8-10. Well, wouldn't you know, now his trough levels are coming back in the 6-7 range. Ugh! So, we had originally tried not feeding him before and for an hour after his prograf was due. Let me tell you how much fun that was! Do you know how miserable it is to tell a 1 year old who thinks he is starving, "no you can't eat for the next 2 hours. Sorry baby boy." :( It's horrible. He would scream and scream until I would give in. It didn't always happen, but when it did, man was it difficult.

So, anyways, when he had his Prograf levels drawn again on Wednesday, he was again low. 6.7, I believe Joe told me, which is no good. The APN agreed with Joe and I that we don't think feeding him before or not feeding him before is making any sort of difference. So, they asked us if we would like to go down on his Prograf, but give it 3 times a day, or go up on the prograf and give it 2 times a day. Well, at first I flipped out at the idea. I mean, I did not want to ruin his sleep even more, or my sleep! Joe had suggested doing 7, 3 and 11. Ack! That meant he would be up until 12 probably. But, then when I thought about it a little bit more, we could do 6:30, 2:30 and 10:30. This would be much easier, though it might mean his nap got cut a little short. But, 10:30 was a little bit better. So, now we have meds 4 times a day, unfortunately :( We have his 6:30, 2:30, 6:30 and 10:30 meds. I was so happy on his 2 times a day schedule. But, the good news is, he may come off of Cytra altogether soon. Though, we will still have other meds anyways. So, I think we will be at 4 times a day for a while. But, at least his prograf dose is lower now. He gets 2.5 ml of prograf three times a day, as opposed to 5.6 ml three times a day. This confused me, but basically, Joe explained that since he will be getting it more frequently, he needs less to keep his levels up. This should also help his kidneys, and his potassium. His potassium levels were great last lab, but lowering the Prograf can only help more!

So, after Joe was done with labs, he had some people from Lurie sign Ben's birthday book. He had his cardiothoracic surgeon, the surgeon's assistant, his cardiologist, a few of the APNs and our favorite nurse from the PICU sign his book. This will mean so much to him when he is older. I know he doesn't care right now, but we love it! And it will be great for him to look back at. Mariah, the nurse from the PICU, said "Oh my gosh! I was having such a bad day today. But seeing you looking so great, my day has just gotten tons better!" We love that she was able to see him so healthy. The last time she saw him, he was 4 months old and 2 months post transplant. He still looked good then, but the majority of the time she saw him, he was hooked up to 14 different meds and a vent and so many machines! We also left a pic of him for the PICU to hang up on their success board. :) I'm sure they love seeing their success stories!