The last week has been CRAZY! Just when I think we are going to go through a quiet time some little issue rears it's ugly head! Last week after labs came back they ordered D5 with potassium and asked me to repeat labs the next day to recheck. I ran the two large boluses that were ordered. They weren't done until midnight so I unhooked Bug in the dark and headed to bed. When I woke up the next morning, Alex's eyes were really red and swollen. It looked like an allergic reaction. After checking in with Alex's doctors and checking vitals we wound up having to give benadryl and albuterol for low Sats. After the benadryl the swelling went down and Alex looked much better. Labs also looked a little better, but were still not back to normal. Dr. N decided we needed to go back to doing IV fluids every night. Oh well! Wednesday night we started the fluids earlier so I could watch him. Once again his eyes swelled and got red and he had a few hives. We stopped the infusion. Thursday, I left multiple messages, but couldn't get in touch with GI to get the fluids changed. Theresa (Alex's nurse) and I decided it was not safe to run the fluids again, so Alex went without fluids Thursday night. Friday I called the company that manufactures the D5 to try and get some more info. I did find out that all of their Dextrose is derived from corn. Alex is anaphylactic to corn so the reaction is not as surprising. The only question is why he doesn't react to the dexrose in his TPN. The company has their scientists looking into it, but they think that the D70 is more highly processed then the D5 possibly removing more corn. As you can imagine this causes huge issues. My child has to be able to have Dextrose. In all mito children it would be important, but especially with Bug's severe hypoglycemia. Anyway, I finally got in tough with GI on friday, but our doctor and his dietician, who we work very closely with, were out. The covering doctor and nurse were insisting that it was not possible he was allergic to the dextrose and they didn't want to order different fluids. It was decided we would try one more time using a different filtered tubing. We started the infusion and within 25 min, Bug was swelling agin. I immediately stopped the infusion and they did order different fluids. Not sure where this leaves us in terms of dextrose, but we will talk to Dr. P, our allergist soon.
In the meantime, Alex's Dexcom (continuous glucose monitor) arrived on Friday. I had spoken to the rep and she felt like I would be fine inserting the sensor without training. We started using it Friday evening. It has been interesting to say the least. Alex's blood sugars are all over the place. His sugars are high much more often then we realized. We have also learned that he is dropping into the 40's even when on feeds. It has been enlightening to say the least. Alex has been such a trooper as always. Not only is it another needle weekly to place the sensor, but we have to calibrate it every 12 hours with finger sticks. I did not realize this before and had told him we wouldn't be doing finger sticks anymore. Now we are doing more then before! He just smiles through it all!
In fun news, Grandpa came a few days early. He flew in Sunday morning and Alex has been so excited to have him here. We are excited for a weekend of fun as Alex turns 8 on Friday and we have lots of fun surprises planned! My birthday update will go into all that!
Thanks for all the love and prayers.