Yesterday Roman went back to his Kidney doctor. His last appointment was in November and he had not had any improvement in his Kidney function since September, so I didn't really know what to expect. We were hoping things would continue to improve, but we never know what to expect. That's the hardest part of an unseen illness, you can't SEE it! You don't know what is going on in there!
Now onto the appointment. They weighed and measured him and he is now in the (39 lbs) 10% for weight and (40.75") 4% for height, his blood pressure was a little high, but normal for him since he was hospitalized (105/77). In July he was not even on the charts for weight or height, so he is growing! He's grown 2.5" since July so on track to grow the 3-4" they predicted he would grow this year. He weighed 33 lbs at the hospital, so he's gained 6 lbs, which is huge.
His creatinine level had been consistently 1.02 the previous 3 blood draws (well 1.024, 1.021, 1.027), we were hoping it would be below 1.0, but with 3 relatively stable draws we weren't very hopeful. Anyway, his creatinine level is now .90. We are now hoping for under .85 which will put him over 50% function. His doctor is a very positive realist if that makes sense. He is always happy about good news, but realistic that it may or may not improve and makes me feel okay about things.
His iron level was another thing we were concerned about, if it was low again he would need another hemoglobin shot. He has been taking iron twice a day for the last 4 months and his iron level was on the high end of normal. Meaning, not only did he not need the shot...he is able to only take it once a day now!
His sodium, phosphorus, and potassium levels were all LOW, not even on the low end of normal, low for a "normal" patient. So they said Roman could have 1 meal with potassium (meaning he can now have tomato sauces on noodles, potatoes, oranges) and 2-3 servings of dairy a day (and they said ice cream would be okay, he is over the moon excited about having ice cream again!)
He did add one Rx for Vitamin D and he may have to have something to help with his parathyroid at the next appointment, which is also common with kidney failure. He said the biggest problem with the elevated parathyroid hormone is that it can lead to Ricketts (which is apparently also common with kidney kids) so we are just monitoring that also. So one Rx down, one up, overall great news.
Monday he goes to his Urologist, hopefully we get good news there too.
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