Control and Trust

Today was a difficult day. Vega is still spiking fevers and we still don’t know why. In an attempt to find the cause we now had a chest x-ray, ultrasounds to look at liver, spleen, kidney, bladder etc and we were told yesterday that they might want to do a ct scan of her chest. I was not happy about the possibility of a ct scan because I worry about the amount of radiation that Vega is being subjected to. When we were at Kings A&E at the night of Vega’s diagnosis, she had hurt her foot. We were sent for an x-ray to see if anything was broken and they were very keen in finding out where exactly her foot hurt, so they would only need to do 1 x-ray rather than x-raying both sides. They said then that they do not want to expose her to any more radiation than absolutely necessary. Four hours later when they knew she had leukemia they sent us for her first chest x-ray. She has had many since, always to determine if she is harbouring a chest infection. She also had a Linogram, when dye is inserted into the port and then x-rayed repeatedly to see if there are any leaks (because her port occasionally does a funny weird whistling sound). And today a CT scan. The Internet, my trusty anxiety generating machine, told me that one ct scan equals between 50-400(!) x-rays, depending on the area scanned. So from, let’s-not-do-2-x-rays-on-her-foot to come-on-let’s-turn-her-into-a-glowstick. Because once you have cancer it is not the x-ray radiation that you will die of.
So when I came to the hospital this morning (Ray had spent the night with Vega), the nurse comes in says Vega is nil-by mouth, going for ct scan, cannula has to go in her hand for the contrast and she will be on sedation. First thing I did was snap at Ray. What did the doctors say to him, when was all this decided, yada yada yada. Of course none of this was his fault so I asked the nurse to send the doctors in again pronto so we could discuss the ct scan. Although Vega is still spiking fevers I did have the feeling she is getting a little better, mainly because she has started eating after surviving only on crumbs for the last week. It is frustrating because the doctors are clearly grabbling for straws and are doing all these tests because they can just not find the source of the fevers. The reason for the ct scan was to exclude the possibility of a fungal infection in her lungs or her heart, either a dormant or active one. She is already receiving an antifungal medication so the treatment would not change in the event of them finding she does indeed have a fungal infection but she would have to take the antifungals for a significantly longer time than if they would not find an infection.
And here I am again, the heavy heavy burden of parental consent weighing me down so much I can neither breathe nor think. It truly is awful to feel such a constant lack of control in regards to Vega’s treatment, the need to handing her over so entirely and sometimes literally, hoping that they do the right thing and their jobs properly. And yet, it is always me (well Ray and me) who have to give consent. Please sign here if you consent to us poisoning your child with xyz chemodrugs. Sign here for the next general anaesthetic. Sign here for the central line surgery, oh and while you are at it, sign here for 400 x-rays. And what choice have I got? I can research, learn, question, cry and what not but in the end, what choice have I got? I do not want her to have a life threatening, dormant or active, fungal lung infection. And if they have the slightest reason to suspect she does, enough for them to outweigh the risk of the scan with the risk of an undetected illness, then I have no choice. Or do I? These things haunt me in my sleep. Am I doing the right thing? Am I making the right choices?

And because nothing is ever easy, it was not just the ct scan I needed to worry about. Vega had to be nil-by mouth, which is always difficult for her. No water no nothing. And then the cannula- they could not use her central line for the contrast dye that is being injected for the ct scan so they needed to cannulise her hand. It is such a horrible thing having to hold her while they prod around her hand until they find a suitable vein. And because she needed to lie very still for the scan, she was sedated. With oral medication that apparently tasted so awful, Vega felt it was necessary to kick me in the face while I tried giving it to her. And then at the ct suite, after i put her little limp body on the table i had to wait outside a wooden door while the sign kept flashing “Do not enter. Radiation in progress.” I cried. It took less than 5 minutes but i cried.
Back on the ward I cried a little bit more because it makes me sad to see Vega sedated in bed. The nurse came in and said something about me wanting to talk to the doctors again because I am distressed. I really wanted to hit her at that point. Shout at her that I am not distressed, but bloody sad and that all of this is shit and she has no idea what I am feeling. Anyway, I didn’t.
We are now feeling the repercussions of the sedation and the trauma of the afternoon, because Vega’s bloodpessure is really low and she is drowsy. It was a horrible day for her. And for me.
We are ending our day with a good old bag of blood. What a load of shite.

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4 thoughts on “Control and Trust

  1. Sending you the biggest hug I can virtually and when I see you I’m gonna give you an even bigger one! I’m glad I wasn’t there, otherwise I might have actually hit her for you. Of course you are distressed – your child is suffering – I think sometimes they are so numbed down to it all they just forget.
    Stay strong.
    Lyra and the girls had a lovely evening, dressing up, movie and then toasting marshmallows in the garden…soon Vega will be joining them too.
    Lots and lots of love honey.x.x.x.x.x.x

  2. They are horrible decisions you have to make. Not the same at all but when Lauren was diagnosed with IgA deficiency and I was told that the moment she would get a fever( which was often and usually during the slightest cold) I was to give her antibiotics. I used to feel such quilt at giving antibiotics so frequently,but it was and unfortunately still is the only thing that makes her better. She has yet to get a simple cold and get better by herself, it just never happens and I always need to give her the trusted antibiotics, my cupboard has at least 4 bottles in it, all in powder form ready to be made up by me when she gets a fever….. As a parent we have to make choices,do we give them these things into their body to make them better or do we hold off and see what happens.like I said, my situation not the same as yours at all, but people with truly healthy children often don’t understand the worry one can feel when you see your child so unwell, and so reliant on us to make the right choices. I was criticised for giving Lauren the swine flu jab a couple of years ago, I had no choice in the matter, the alternative could have been far worse for her, you have to weigh up the pro’s to the cons. You and Ray are doing all you can and I want to cry for you all because no one should go through what you are going through, it breaks my heart. As I have said before, I think of you often and follow your journey, and I can’t wait to hear the news that vega is well again. Stay strong and keep on fighting x x

  3. Kathi it is really heartbreaking to read this. i really hope.u can put it behind you soon. Let.me.know if there’s anything u needme for.

  4. Oh Kathi my heart aches for you both – and i so empathise with the ‘shite’ that some professionals say – there are a few docs walking around kings that have had my wrath – some just dont get it – the simple need to human and let you feel sad and grieve when life is such a constant stream of exhausting, painful experiences. God i keep thinking how awful it is making those decisions for such a little one – i went thru similar turmoil at every friggin procedure – but that was for me. I know how bloody relentless it all is – and i hope you can find some peace in knowing that you are doing EVERYTHING possible for your precious girl…. i doubt you feel amazing at present but you are and the posts of all those who love and support you testify to that. wishing, willing and praying for the fever to abate and thinking of you always xxxxxxxxxxxxx

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