These are my thoughts, struggles, and cherished moments as I carry my family through childhood cancer.
Tuesday, May 10, 2011
All you need is love
This was written on the whiteboard
in Brinley's private room.
Well...we're in the big house again. Big house as in the hospital, not jail, although we're in isolation so it's kind of like jail, but nicer. Yesterday Brinley was having issues regarding her temperature, nothing that was considered a "fever" but more or less elevations. Her pattern was 99.9, 97.5, 100.7, 98.3, I called the oncology unit to let them know and they told me to keep her hydrated and keep an eye on her, which I did, so when she spiked to 101.3 I called them to let them know I was bringing her in. When we first arrived the ER was packed, I've never seen it that full in my life, they must have had at least 5 ambulances all at once, plus a full room. The triage nurse told Brin to go find a seat in the waiting room, which is a HUGE no no when dealing with compromised immune systems. I informed her that we were told in the beginning that that we're never to wait in the ER due to high risk infection, she gave me her biggest "I don't give a crap" look and told me "tough". Well tough for you missy because I called Brinley's oncologist and told him that we're sitting in the waiting room, in a matter of seconds after hanging up, the phone behind triage rang, there was a "yes...yes...I'm sorry" and we were called back.
The nightmare didn't end there. We got into a room in the ER and they did a vital check, and a temp read, which was at 104. They then decided to go ahead with antibiotics right away, and then draw blood for labs. The nurse came in and held out two different IVAD needles and said, "which one do you want to access her with". Excuse me? I'm not doing your job...I've never accessed Brin, and I've never wanted to. It's not bad enough that I have to drag her into the hospital kicking and screaming, now you want me to poke her? She then said, "ok well...which needle do they use on her?" I have no idea! I assume it's the small 3/4" needle because of her size, so she preps the 1" needle. As another nurse comes in, she gets the IVAD half way in and says, "there we got it" and I tell her, "no it's still half way out of her chest" so she bares down on the needle to jam it through....Brinley is screaming at this point and I tell her to stop and I want another nurse and a smaller needle. So smart nurse #3 comes in, accesses Brinley without an issue WITH the smaller needle and we're done.
Labs come back 30 mins later, Brinley's hemoglobin is 130 (great) white blood cells are 4 (bad bad bad) and platelets are 9 (super bad). All defenses are down, and she has no immune system. This was something we had kind of emotionally prepared for, and it was a huge possibility that this could happen during the last part of standard delayed intensification. But it's a whole new feeling in itself when you find out you're being admitted, especially since we haven't had to be admitted since we left back in November. For that we're lucky, and the fact that this is her first time being neutropenic is lucky as well. But I did get a little anxious about having to stay here again, it just brings up old feelings, and memories of walking the hallway late at night trying to hold myself together.
Today so far, Brinley has been remarkable. She's full of energy, happy and fever free. We have to wait for her cultures to come back which takes 48 hours, and she also has to have a good run of antibiotics for 3 days. We'll be here until at least Thursday they say, possibly longer depending on blood tests, cultures, and we need to be fever free for 48 hours. So there is a lot riding on discharge, but there's not much I can do except enjoy the sun from the 4th floor window.