Frustrated, that I how I have been feeling a lot lately. The other night at midnight when the nurse came in to do Georgia's midnight medicine dose and draw labs she said that Georgia would likely need a blood transfusion by morning. At four am the on call resident came in with a consent form for me to sign... he started with "I'm sorry we didn't have you sign this before" then went over the risks and why they needed to give her red blood cells... all of which my brain was trying to process and think of all the right questions that a good mom would ask before letting strangers transfuse blood into their child. He said, the risks are low and we do this all the time... well resident, MY KID DOESN'T DO THIS ALL THE TIME!
A day before that a dietitian stepped into our room and asked if she could talk to us... sure, I thought what does she want to talk about? She said, "I understand the doctor talked to you about the fact that Georgia is getting close to needing a feeding tube..." I looked at her shocked, No! No one has talked to me about that.. she then proceeded to show me a record of Georgia's weight and how it has been dropping. I was furious, we have been her for over two weeks and now we are having this conversation??? Why didn't we talk about what her weight was and did everything we could to keep it there while she wasn't getting treatment? I had a word (shall we say) with the doctor about how displeased I was with their "say nothing until she's lost weight" approach. She said "I'm sorry, then told me that she is at a healthy weight but kids on chemo need to have extra weight on to avoid the feeding tube... and that it's not a big deal, kids get them all the time. Well doctor, MY KID DOESN'T GET THEM ALL THE TIME!
Yesterday during morning rounds the crowd of doctors and nurses piled into our room, read off their numbers and Georgia's plan for the day. Once finished the attending doctor said to Brian and me "it is really important that you get out of the hospital, you know, this is a marathon not a sprint.." then asked us what we were doing to get away.. all in front of the doctors. This to me was an inappropriate setting to ask these questions and quite frankly none of her business. We hate living here but if this is where Georgia is than this is where we want to be. Being with her, giving her comfort brings me comfort and sick or not I think my daughter is pretty stinkin' awesome and I like hanging out with her!
This is a frustrating world to live in.. my child's health is their business, but it's my life. All of the people who poke and prod her get to go home each night to their lives but we remain here living ours. I am tired of getting unsolicited advice from people who have never walked in my shoes.. what I would really like to say to them is, when your baby has cancer let's talk about what you'd do, but until then remember that to you this is business, but this is my whole world.
Georgia did get a blood transfusion and is doing really well, she has more energy and her "happy scream" is back which makes me smile. We are working on her weight and so far have avoided the feeding tube.. she is eating olive oil on just about everything and has taken a liking to butter.