So, when Ben was admitted, they did a Prograf level. His Prograf is one of his immunosuppresants. It was very very low. His target range is between 10-12. His was 2.5. We did a redraw a few days later and it was a little better at 3.5, but not high enough. So, we did another lab yesterday. We just got the call from the cardiologist a couple of hours ago. His Prograf level is 13.2. So, now it is too high. The nurse asked me all of these questions. Is he more tired than usual? How is he peeing? Is he taking in fluids? Is he seeming lethargic? Vomiting? Etc.
So, the reason for all the questions? Well, they had also drawn a basic chemistry yesterday as well. Apparently his potassium is too high and a few other levels were all too low, indicating dehydration. But, the thing is, he does not look or act dehydrated. He had recently put back on a bunch of weight, he is crying tears, he is playing with his sisters, he is a little crabby since his shot yesterday but not inconsolable.
So, at first the dr wanted us to go to the ER, but, I asked if it would be ok if we got labs drawn and saw the pediatrician tonight. The APN said that would be ok and they would decide based on tonight's labs if he needed to go to the ER for rehydration. I feel like if we showed up at the (germy!) ER with Ben they would look at me like I am nuts because he does not look or act dehydrated. But, that is apparently how it goes with these heart babies. They can look perfectly fine and not look dehydrated at all and then a minute later they're seizing because their levels are so out of whack! The meds that he and his heart friends take can really screw with all of his basic functions in his body. Obviously these meds are VERY necessary so that he does not reject. But, at the same time, they have some side effects too. So, we have to be very careful with him.
This is just another reason I and our whole family are fully vaccinated. We need to make sure to protect Ben. It is almost 2 weeks since he was hospitalized for dehydration. Yet, we are still feeling the effects of that stomach bug and the problems it caused. If a stomach bug can cause this many problems for him, I am terrified to think what something like whooping cough or chicken pox would do to him! :(
Right now we are just hoping for good results on tonights labs, otherwise we will be heading to the ER for fluids and more labs and possibly x-rays and echos. :(
Update: So, we have a GOOD update! Ben has had his labs drawn and read already. His potassium is still slightly high 5.9. But, he tends to run high normal anyways. Not anything that they put him on a special diet for or anything, but, in the higher range of normal. ALL other labs look great! No signs of dehydration at all. And the dr checked him out and agreed with us that he looks fine and labs indicate he is fine and there is no need for hydration. The other thing is, because his prograf was SO low, they upped his dosage quite a bit! He is on 5.2 now. Well, prograf increases potassium levels. Therefore, his potassium will be higher. The pedi is calling the cardiologist, but he thinks once we lower his prograf dosage, his potassium will decrease too and he will be fine. DH also said that the pedi thinks that this cardiologist (not our normal one) is a bit of a worrywart too. He said he didn't come out and say it, but sort of indicated that, lol!
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