Our brave little girl…
Good evening to everyone.
Chiane has now been on most of the hospital floors and wards at Great Ormond street hospital, from neurology, plastics, oncology, PICU to immune disorders and infectious deceases. She’s been ‘resident’ on the 3rd, 4th, 5th, 6th and 9th floor and got loads of her tests done on the 2nd floor.
Today, Chiane was out of it for most of the day. She is very tired and has been sleeping on her mom’s lap for most of the day. She is on so many different medications, it’s hard to keep up with them all and then they give her more medication to counter-act the side effects of some of the medication she is on.
After a battle and a half they have agreed to start morphine. The Doctors asked Chiane how her mouth feels and if it hurts, she replied that it wasn’t too bad. And because of that, they refused her pain management medication!!! Andia told them to look at the evidence and not listen to what Chiane says. Her mouth was swollen badly. The inside of her cheeks, roof of her mouth and back of her throat is raw and blistered. Her gums are bright red and swollen. Andia then asked Chiane “does your mouth hurt?”, Chiane answered again that it’s not too bad. Andia asked “if you were a boy who is not brave at all, would your mouth hurt then?” Chiane answered that she would have been in lots of pain if she wasn’t being brave. Andia turned to the Doctors and said that Chiane is very brave and hasn’t complained once since the start of her treatment in June 2011, that she had 2 brain operations, had 7 different chemo’s, did 43 sessions of radiotherapy sessions, awake, everything without complaining once. Then said “what makes you think she is going to complain now? I know her and I’m telling you, we need pain management”. They agreed and prescribed the I.V feeds and oral morphine…
Chiane is currently on the immune disorders and infections decease floor. Below is a pic of the isolation she is in when receiving some medications that she breaths in, 2 hours at a time 3 times a day. This will continue for some time.
Chiane is still swollen and her mouth/lips puffed up badly. We have to bath her in her bed and it’s very time consuming. We you special care products to clean her mouth and treat her lips to make it as comfortable as possible for her.
Chiane received her first 6 million CD34 Stem cell transplant today (which was harvest and frozen last year in August). She is not in pain anymore as the pain are now controlled by morphine. She can’t speak due to mucositis. She is very quiet and sleep a lot…. With the Occasional smile now and then.
I spoke to Chiane tonight and re-enforce what Andia said…. That we know she is brave but now is not the time to be brave…. That she must tell us if she is in pain so that we can give her pain management medication. I explained to her that there are medicines for a reason and pain medicine really does work but only if she tells us she is in pain. Chiane communicate through her hands as she is very weak at the moment (open hand is no, closed hand is yes). When we talk to her we ask questions and she answers….
It is tough at the moment as there is so much going on and it’s a very busy, full on hard routine daily. As soon as one task is complete like bathing, it’s mouth cleaning, then under isolation, then an hour nap for her, then it all starts all over again.