Frustrated

Well I should have known when I wrote that Tucker would have a "full" day of school this week that I was jinxing him...this week was the only week that we had no planned appointments. I really wanted him to have 5 full days with his school routine before we go into several weeks of appointments and holidays. Tucker's blood sugar has been higher lately, but it has been correcting itself. Both the Endo and Mito drs were fine with monitoring it, but this week it started skyrocketing. On Tuesday evening it went up to 420 after he ate. You are not supposed to check blood sugar right after you eat because it is higher than usual, but no matter what time it's tested it should never reach 400. I called the endo afterhours, and then re-checked, by this point it was down to 380. The dr said that if his blood sugar didn't get down to 250, we'd have to go to the hospital for insulin. If it didn't get down to 150, we had to call the dr back and see what he said at that point. So we checked it every hour, and it went down by about 80 each hour. He got down to 66 after 3 hours, then back up to 98. The next morning I fed him before school and his blood sugar got up to 491. I decided to keep him home long enough to check him after 30 minutes and 60 minutes to get a good pattern for the doctor. I called the endo at 8am, then waited for them to call back. I brought Tucker to school late and explained the issue to his teacher. I also apologized in case Tucker had been acting wacky due to his high sugar. The teacher told me that he has been amazing lately, and that they are so happy to have him in the class. She even thanked me for sharing Tucker with the class:) I was so thrilled at that point...I always feel like Tucker slows the other kids down or doesn't fit in. But he really is fitting in well with the kids and working so hard to be his best...I am such a proud mommy!:) As I walked back in the door at home, the endo called. They told me to bring Tucker in at 145 and we would be changing his feeds. When I went to pick Tucker up from school, he was NOT happy. I had to drag him out of the school until he saw my car and Sarah waved to him. Then he was happy and ran to the car, thank goodness! We went to the drs office, and Sarah kept Tucker busy while I spoke to the nurse practitioner. She and I had a long talk about Tucker's issues, his sugar readings, his feeds, and his mito. They gave me more of a schedule, a prescription for ketone strips to test his urine when his blood sugar is high, and they changed his formula from Pediasure to Glucerna. I usually blend up food for Tucker and feed that to him 3 times a day at home (fruit, veggies, grains, soy milk and yogurt, meat, and fats) then he gets 2 cans of Pediasure at school. Tucker's sugars were skyrocketing equally high no matter if he got the blended food or Pediasure. The NP said that the dietician will look over the blended food and change out the simple sugars for more complex sugars, then we can re-start blended food next week. For two days (starting Wednesday), Tucker will get Glucerna formula. It has fewer calories per bottle than his blended food or Pediasure, so he has to get a lot more of it. Starting yesterday evening, he got Glucerna, and his sugars came down considerably. So I was thinking it was successful after the first feed! Of course nothing is that easy...last night after Tucker was in bed, Chris and I heard him cry out several times. We ran into his room, and he was asleep. We watched him writhe for awhile, and we thought he was having a nightmare. Chris felt his tummy, which felt kind of hard, but he was still asleep so we just left him alone. Today I had to go into Tucker's school at 930 am and feed him the Glucerna. The endo faxed over the orders to change his formula at school, but they didn't get entered into the system quite in time for 930. So I went in and fed him and told the teacher and aides about the formula change. Again, this is at 930. By 11am, I was back at home, and finally starting some housework. I actually vacummed (I know, hard to believe!) and when I was done I noticed two missed calls from Tucker's teacher. I didn't check the message, I just called her back. She said he had horrible diarrhea, and I had to pick him up from school. The school nurse said it was likely from the formula change (endo agrees) but he still had to go home just in case. So I went back to school, and took Tucker home for the second time in two days....again, he was NOT happy! Once he got home, he ran around and was acting fine, so we are thinking it is definitely a formula issue, which the doctor thinks will resolve. The diarrhea came back after his afternoon and evening feeding, I am still waiting for it after his 830pm feeding. His sugars have looked great, by the way... I am incredibly sad and frustrated right now....it seems that as soon as we get one issue figured out, or even a little bit better, something else pops up. This is the nature of mito...I should not be surprised, in fact, I should expect this. It's just different from saying that we know he'll have more issues, to actually experiencing the issues. Tucker's tummy is huge tonight, and I am worried about him. Tucker's class is going to Global Wildlife tomorrow. The kids have spent all week learning about the animals they will see, and they are so excited about it. No, Tucker doesn't come home talking about animals or anything, but I know that he realizes what is going on at school. Mrs. Amy told me that she really doesn't want him to miss the trip; neither do I! Chris and I tried to figure out how we can go, but he pointed out that we'll spend most of the day on a covered wagon feeding animals....no bathroom or changing area nearby! So I don't think we really have a choice. I am going to stop his Levo Carnitine again tomorrow to see if that helps stop the diarrhea at all, and then call the Endocrinologist's office at 8am to get a new plan if the diarrhea doesn't stop. I really don't want to "wait out" the diarrhea, but I'm not sure what other option they'll give us. Another thing that hit me today was that I realized that Tucker actually missed more school in October than he attended; I really do not want the same to be true for November. And these are supposed to be his "healthy" years, before his issues get worse. (At least, the way we understand depletion syndrome...maybe we're totally off the mark). Even with all of this, Tucker has been hilarious. Today Mrs. Joy came over for speech, and she said that she could tell he was bored! He went through the whole box of language cards and was "reading" a book when Chris and I went into the therapy room at the end of the hour. He told Chris a whole sentence "I want de teye-gah bank". He had to say it a few times before we understood what he was saying, we had never heard so many syllables come from his mouth that actually made sense. I feel much better about Tucker's blood sugar, especially now that we have the urine test strips to get more information and know if he needs immediate attention. I just hate that fixing his sugar issues has led to the tummy issues. Hopefully we'll get it all figured out tomorrow. Please keep Tucker in your prayers!