The last couple of days have been very hard on Chase. Since we were released, we have been trying to figure out the correct dosage of BP meds for him. The dose prescribed completely zaps him and leaves him lethargic and he sleeps all day and night. A lesser dose seems to have no effect on the BP. Last night and this morning, his blood pressure has been around 154/100 even with the meds.
We talked to his nephrologist last night and decided to keep monitoring him through the day today and make a decision Thursday about what to do. The test for the adrenal tumor has not come back yet, but they are checking on it daily for us.
The colonoscopy scheduled for Monday is now up in the air due to his BP. He had another bloody diaper last night, so we are certainly wanting answers there, but we are afraid to allow him to be put under general without his BP stable. I talked with his collaborative care coordinator at the children's hospital this morning and our plan is to have nephrology, hematology, GI and anesthesia talk before we move forward with the colonoscopy.
All of these decisions seem so difficult, but I know God will guide us and I pray he will guide the doctors as well.
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