New meds

I received a call from Ben's kidney dr (well, the nurse was the one that called)on Monday saying that his sodium bicarb levels were a bit low. He is on Cytra-2 for this. He is at 9 ml once a day. The dr wanted us to go up to 13 ml once a day. The nurse said if we needed to we could break it up to 2 doses. I told the nurse, "my concern is, he has very bad diarrhea ever since we started him on the cytra. It has gotten slightly better to where it is only 2-3 times a day, but I am afraid 13 ml is going to worsen it." She told me we could go up slowly increasing by 1 ml every couple of days. IF his diarrhea worsened, call back and let her know and we would go back to 9 ml.

Well, for the past 4 days, Ben's GI problems have only gotten worse. I called the nurse and told her "This is not working. I am changing his diapers at least 8 or 9 times a day. It is 10 am and I have changed 4 diapers already and we are only at 11 ml right now." So, she told me that we could go back to 9 ml. His bicarb levels were low, but not dangerously low. The danger with his bicarb levels being low is that he will not grow properly. But, there is also a danger in that if he is having constant diarrhea and vomiting. As well as what it could do to his GI system. They will keep monitoring his levels and seeing how he trends. He has never had the same number for these levels, so it could have just been an off day as well.

After we were done discussing that, the nurse let me know that he also had a very low vitamin D level. They would like him to be at about 30. His level was 13. So, he will have to take a mega dose of vitamin d once a month. The interesting thing is, the only way to get this mega dose is in pill form. Which, Ben is 2. He doesn't do swallowing pills. So, she said I could cut it open and squirt the liquid in his mouth. We will check his levels in about a week and see if that helped as well. I asked if being in the sun this summer might help, or adding in more Vitamin D foods. the nurse said that his levels are so low, that over the counter supplementation and sun is not going to help him. And anything short of going to the Caribbean and sitting in the sun for a week would not work. Besides which, they advise sunblock at all times, so even that would not help him. So, he will just have to take this mega dose of Vitamin D once a month. And it should not have any side effects to his GI system.

I did get the Vitamin D from Walgreens today. The pharmacist asked how I was going to give it to him since he was so young and it would be a choking hazard. She suggested squirting int in his food. I thought about that, but decided squirting it in his mouth would be best since he is at this stage of just throwing his food these days. We got home and I said, "ok Ben, time to take some medicine!" Ben promptly replied, "NO! No more medicine! I no want it!" I told him, "you take your medicine and I will give you chocolate." That got him running. He did very well with it. I squirted it in his mouth and then gave him 5 chocolate chips. Hopefully enough was in his mouth to make a difference. It's not a large pill, and I had to cut it open and squirt it in his mouth. So, hopefully enough got in his mouth to help.

The other thing about Vitamin D that I found out-If you are deficient it can effect your CRP levels. Remember those levels that they were worrying about back in January and freaking me out that he was in heart block? Yep, those levels. It can also affect heart health. So we definitely want him to get to a good level! It will be interesting to see where he is at his next labs.

Enjoying the sun on ONE of the nice days we have had recently