The allergy testing on Monday showed no food allergies! As you know from previous posts, the term "allergies" has somewhat followed us on this entire journey and even though we have ruled them out through elimination diets in the past, it is such a relief to get testing done and rule them out for sure. Our frustrations around them saying he has allergies is just that they were stopping at that diagnosis and didn't seem to want to dig deeper for answers. By talking to our GI doctor before the testing came back negative, they were really close to putting Chase on an elemental (predigested and allergen free) formula with no other foods by mouth. I was terrified as the previous elimination diets have been so hard, but this would have been almost impossible. I have learned so much in this part of our journey...mainly patience and just understanding how perfect God's timing is!
Chase's nephrologist called on Saturday and is having us monitor his BP several times a day. It is still elevated and the medicine is still making him a little sleepy, but he seems to feel a lot better and he is having less spikes. We talked about genetic testing for Pseudohypoaldosteronism Type 2 and plan to proceed with the testing. The lab in Germany already has Chase's DNA and we hope to get authorization for the test (this is something you have to do to get testing done outside of the United States) soon.
Today is a special day...all of Chase's doctors are going to meet together in the same room and brainstorm. They called yesterday and said it would be a discussion involving genetics, hematology, neurology, nephrology, endocrine, infectious disease, GI and his specialized care doctor. We are hoping to hear back sometime this week with information from this meeting.
Ryan and I have decided to cancel the endoscopy scheduled for Monday. We have been very compliant and trusted the doctors on most everything, but we feel this is a procedure that the risks certainly outweigh the benefits. Chase had a lot of trouble with his anesthesia a couple of weeks ago and had to be intubated. The endoscopy is a procedure that would further compromise his airway and it is just unsettling to think about. I prayed a lot about it as I put my faith in God for making these decisions. Our answer came Monday when the allergy testing came back negative.
The upcoming MRI is another thing we are praying about. It too involves anesthesia. I trust God will guide us on this decision as well.
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