Changes, necessary but thumbs down from Mom

Just needed a good picture of her smile today with her big Sister!

Avarie continues to do about the same which is making the Dr's frustrated. So they are going to change some things up. We have had Dr. Faith on her case this week, she is a new Oncologist here, she is nice but she is just out of her residency about 1 month ago. Dr. Norwood takes over tonight and I am grateful. Its not that Dr Faith wasn't good, its just that Dr Norwood is great. She will be great probably one day, but she just needs time to grow and learn. Dr. Norwood is also on the Pain Committee for the hospital, so he is very interested in that part of her which is good because it has started to get worse. He has some good ideas for that, we're going to discuss them a little more tomorrow. But for now she continues to have this infection even though she is on anti-fungal medicines that should be wiping it out. They have been frustrated by the fact that they can not find a source of the infections. Then yesterday they discovered a small blood clot at the base of her "buddy" that is her port that is directly linked into her vein that allows them to access her veins without any discomfort to her. It is directly under her skin, she had it surgically put in there when she was first diagnosed. She gets all her meds through it and has blood drawn several times a day through it. She also has a PIC in her arm that they give her meds through too. She has so many meds and fluids going that two lines really isn't even enough most of the time, but it is the best they could do for now. But since discovering the small clot they are wondering if the clot may be the source of the infection, so they want to remove the "Buddy". They also want to remove her PIC. They don't want any foreign thing in her body for the infection to latch onto. Unfortunately this means that they will have to change how they are administering her fluids and meds. They are going to stop the TPN that is her feeds through her veins and just do fluids and pain meds through IV's placed in her hands. They have switched her NG feeds that go through her nose to her stomach to a completely predigested form, instead of the partially digested that she was on before. They are hoping she will tolerate that more, she is still throwing up a couple times a day. So we have not been able to increase her feeds through her NG Tube yet. Until we are able to increase her feeds she will be without any nutrition besides fluids keeping her hydrated. They said that nutrition is just going to have to take a back seat for a few days while they try to figure this out. So for a little while she will not be receiving any nutrition, I'm not happy about that. They are hoping to be able to go a whole week with Port and the PIC removed, but they suspect they will only get maybe 2 or 3 days, but that will give them time to biopsy the clot and the lines that were in here to see if they can find any signs of infection on them. Then she will have to undergo surgery again and have them put back in, but in different spots. I hate this idea, but I understand why they want to do it. I am just so frustrated at the thought of setting her back again. She just started smiling and playing again this last week, and her physical therapy has been going great. Now we're going to put her through some more surgeries and that always sets her back and makes her retreat emotionally. I know they are going to want to do this all before Christmas, which means she will be completely emotionally withdrawn on Christmas. I just wanted her to have that one day to forget all of her worries and pains and just be a little girl and see all of her presents and be excited to open them and play with them. I just wonder how much more her little body can take. The Dr's all tell me and frequently just how sick she is and how she is just such an abnormal case. I'm glad that she is not normal, that means that other families are not having to go through all of this and it means she gets extra attention by the Dr's, they are very careful not to overlook anything with her, but at the same time it scares me to have them tell me that, and when I tell them that it scares me sometimes they tell me that she scares them too, hello that doesn't make me feel any better, but I think they are just trying to let me know that they are taking her case very seriously and that she is really as sick as I think she is. They won't even consider her a candidate for transplant until this is all completely cleared up and she is "healthy" (without infections) for a good length of time. We still don't have any results back on that, but we suspect we will in the next week or so, but even with a positive match she will still be months off from doing the procedure.
Oh, one other little thing going on with her. Tomorrow she is undergoing a special test where they take out some of her blood and inject it with this special chemical that attaches on to white blood cells and makes them "glow". They then put the blood back in her and let it circulate through out her body for a while. They then x-ray her and the chemical makes all of her white blood cells light up under x-ray, it can show them where major concentrations of white blood cells are, then we can know where infection sights are. White blood cells are your disease fighters, so where ever they are in big concentrations you can then see where the infections are hiding. That is tomorrow at 3pm, she will have to be asleep for that one, not sure why? It just occurred to me that I don't know why? I will have to ask, I hate not knowing things?