Feel free to ignore this post because it is nothing but venting my frustration!!!
Ever since coming off of his TPN (IV nutrition) we have been giving Alex replacement IV fluids. He has felt great. As anyone who has seen us over the last few months can attest, Alex has more energy then he has ever had and just feels good. As I have posted several times over the last week these fluids came into question. So we have stopped them for the past few days per doctors orders. Alex is grouchy, not feeling good, not peeing, generally just not himself! His ammonia level is high for the first time in 4 months. I am just annoyed! Why do we need to rock the boat when he is doing well. I understand that there is a risk of infection from leaving his port accessed, BUT we have been very careful with his care and have only had one infection in a year and a half. I just feel like his quality of life should count for something!
The picture at the top of this page is of Samuel and Landon, 2 of Alex's "mito friends". Dr. K calls these "her boys" because the three of them are hospitalized more then her other patients. This is the first picture we got of all three together.
Thanks for letting me vent this morning!