As I typed my title, Day +36 I have to laugh... we aren't day 36, we are just wrapping up day 45 here in the hospital. For the past three days we have been able to go out on pass which has been literally and figuratively a breath of fresh air. To be able to take Georgia home, to see her pop up and use her "walking toys" better than she did before, to see her cruising furniture, dancing and to see her recognize home has been a much needed mental recharge. I will say four hours is just enough time to get settled and want to stay just as it's time to be heading back out the door.
When this stay started 45 days ago I was so amped up and armed with questions and information, I wanted to be a part of rounds and found it really annoying when they would talk outside of our room and only come in for the exam. Today I woke up and wished they would just chat amongst themselves and skip the exam... we are having the same conversation everyday about Georgia's eating. We're still not really cutting it but things are slightly improving which just adds fuel to my "let us try it at home" fire. I don't think Georgia is going to magically start eating large volumes of food at home but I see how happy she is when we're there and know it would make at least some difference.
As frustrating as all of the calorie, food, NG tube talk can be it is certainly not lost on me that we are lucky to be able to be so concerned about this topic. Georgia's numbers are still looking really good and we got the initial results back from Georgia's bone marrow aspirate - no blasts, very, very good news. We will have to wait until tomorrow to hear about the tri-lineage of the donor cells (still not totally sure what this is about) and it will be at least a week before the cytogenetics are back.
Each piece of this process has a learning curve, not only in medical terminology but also in defining where, as a mother I fit in, which decisions are still mine and what is black and white... not the gray area that is so massive.
Ah yes... that gray area: I have a new saying at work... "everything is set in mud"... As you learn more and more about medical terminology and "treatment" plans just know that nothing is set in stone... ever! Science is not exact. Science is a constant learning experience. Because Georgia's situation is new to everyone, they have no idea WHAT the next step really is... they can only go by what has worked for others but the others didn't have the same diagnosis... SO! while they are guessing at the feeding tube scenario or the next med scenario or any other scenario that may come up, know that YOUR opinion matters. You know Georgia. You know your family history. When you voice your opinion and they look at you like you are crazy or inept, ask them... "so has this worked for every 15 month old in the past who has had the same symptoms and diagnosis as Georgia??? Oh wait... NO ONE has had the same symptoms or diagnosis as Georgia... Well, this is what I think..."
ReplyDelete