Kidney clinic 9/18/12

Nana, Ben and Joe

So, Joe took Ben to the kidney clinic yesterday. The cardiology team had referred him there because of his past few labs. They wanted a renal ultrasound and some labs done and then a meeting with the kidney fellow. Well, lets start with the good news. His Potassium is down. So, we don't have to worry about restricting food anymore. Yay! His magnesium is up, so we are at 2 ml of mag once a day now. Though, this may change next week since they drew labs at 9 and he had his morning dose of mag at 7. It may have been artificially high. This was the case for his prograf levels yesterday. The APN called to tell us his prograf levels were 13.2. When I reminded her that he gets prograf at 7 and they drew labs at 9, she changed her mind about lowering the dosage of prograf. Instead, we will repeat labs next Thursday.

SO, now for the not bad, but not so great news. So, Ben had a renal ultrasound done and labs and talked with the kidney dr. Apparently, he has chronic kidney disease, stage 3. This sounds really scary! Don't google it, or you will see things about needing a kidney transplant and dialysis and that it is irreversible, and needing many many more meds. Yeah, I googled it, even after Joe told me not to google it. I can't help it! I'm a worried mom. But, just save yourself the trouble and worry and don't go looking. The dr's explained it to Joe, and he explained it to me, so it is 3rd hand information and I am going to try to remember what he said. I'm sure if I get it wrong, Joe will update this with the correct information. :) So, basically, the prograf is hard on the kidneys and while he does have some issues with his kidneys (they are apparently functioning at 2/3 capacity) it might not be this chronic kidney disease. Also, his kidneys DID receive some damage before his transplant. As a function of the heart failure, all of his organs started shutting down when he went in to cardiogenic shock. They reversed this with the meds that helped his heart, but still, his organs took a hit before they got him stabilized. There is a very good chance he will outgrow this as his prograf dosage gets lowered. Right now his trough level range is 10-12. So, they keep bumping him up because he has been in the 7-8 range. Once he is 1 year post and his biopsy looks good, he will most likely go down to 8-10 for the trough range. Then they can lower the prograf dosage. What this means for us right now (since he is only 8 mths post) is frequent labs and not raising the prograf levels too much each time. Cardiology and renal will be working very closely to monitor both things. They also told us to keep him very hydrated since that will help his kidneys function better. There is also the possibility that he has what is called BK virus It is not very likely, but it is a possibility. If he has this, it would mean adding in another med for about a year and that would, hopefully, get rid of the virus and all would be well. The doctors were all very optimistic that he would outgrow this and his kidneys would be fine. They didn't even start him on any kind of medicine. We are just going to do labs next Thursday and then we will discuss the possibility of meds or adjusting the prograf dose.

The other thing they found was he is slightly acidotic. This is most likely due to  the fact that he just got over his diarrhea. It should be no problem. They said they see that in kids who have GI bugs. So, they will check that next week too. If he is still slightly acidotic, they will add in another med for that. Basically medical baking soda, to decrease the acid levels. He is also slightly anemic. So they increased his iron to 4 ml per day. 2 ml in the morning and 2 ml in the evening. That one is super fun since he hates iron. I am thinking of trying to mix it in with yogurt or something fruity tasting so he stops spitting it out. Oh yeah, that's Ben's newest thing, he likes to let the meds pool in his mouth and then dribble them out. Super fun :/ Luckily, for the most part, he likes his cellcept and prograf. So, we usually don't have a problem giving those. But, we can't have him anemic either. So, we need to get him to keep his iron down.

So, that's where things are. I guess we will be having a few more appointments to schedule now. Oh, and he goes for his DTaP shot today as well. I asked cardiology yesterday if, due to all this new stuff, should he still get the DTaP. The APN said it should be fine and they don't see a reason not to give it. But, they will defer to pediatrics for that one. I am glad he is still able to get that shot. I want him to get as caught up as possible, as soon as possible. We do not need him getting any vaccine preventable diseases on top of all of his other issues!