Lillian had her third infusion today. Everything went well. One stick for the IV...woot! I guess I thought since she had had no reactions that we were out of the woods for reactions...but no. She can still have an allergic reaction each time. She will get tylenol and benadryl before each treatment and they have more benadryl and epinephrine on hand if she does react. They mix her dose new each time we are there based on her weight.
After many, many phone calls and pharmacies. we still can't get her breathing treatment antibiotic, so the dr. pulmo wanted her to have a baseline EKG and then if he is ok with how that looks he will put her on an every other day antibiotic that will go in her gtube. I just hope that doesn't add to the GI issues. We were able to go right upstairs in the center and do a walk in EKG and it literally took two minutes. Waiting to hear from them about if we start the medicine.
The trip home was supposed to include a stop a LJS per her request and we stopped at one and they were closed for a water line issue...which was apparently my fault. She cried, wouldn't speak to me, and was very unhappy up until a couple hours ago. Come to think of it, she was mad at me on the way there too because I wouldn't let her take multiple bags. Mind you, the backpack she did take was so heavy she could barely pick it up and she never, NEVER got a thing out of it the whole time we were there. So, mostly a good day.
We did have to pay out of pocket for her med that we gave wrong, but that's just how it goes sometimes.
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