So Konner had his monthly check up for January on Friday the 21. He had been feeling a little sick during the week. He was running fevers off and on all week. On Monday I had called the on call Oncologist and he didn't seem worried about it. He said that although Konner had a port in he is past 6 months post chemo. So he said for me to give Konner Tylenol and that was that. I was and still am really bothered by this. Yes Konner is 8 months post chemo and has been doing pretty good. BUT.......... He still has a port in and no matter what if he starts to run a fever I am suppose to take him to the E.R. so they can give him antibiotics in case he has an infection in his port. This can happen at anytime, He does not have to be on chemo in order to get an infection.
So he had his check up on Friday and all was good until his doctor informed me that they missed 5 TESTS!!! that Konner needed to have done at 6 months post chemo! This infuriated me! one of them being the MIBG test that I had kept asking them if they were going to do one! They kept telling me no he didn't need them! She also asked if I took Konner to the E.R. to receive antibiotics for his fever. I told her what happened and she was mad. So they had to give Konner Antibiotics through his port and also do a CBC and then they told us to go down to X-Ray and get spinal x-rays! That is one of the tests they forgot to do. They also did 2 of the other tests that they were suppose to do which including taking blood samples. The other thing they forgot to do was refer us to a Neurologist since Konner had the tumor in his spine. He had to have a check up. I am pretty irate at this time. They forgot to do simple things. All they had to do was look at his plan. I understand that UNM sees all childhood cancer patients in the state of NM but My son is important to me and if he is not getting the BEST possible care he can get then things need to change. Maybe they have too much to handle I don't know. But they should have gone by his treatment plan. He is on a study and can get kicked off the study if they do not follow the plan! I have not gotten his urine results back nor the results from the CBC. But as soon as i do I will let you all know.
Sorry for my rant. I'm just frustrated and worried. My husband and I have alot to think about for Konner's care. He is one of the 3 kids that are important to us. We love our kids and would do anything for them. Thank you all for your continued support and prayers!