Readers beware- I am feeling blue…

I am double blogging again. I have no one to talk to tonight in our little cell and I am upset. I tried to speak to Ray on the phone but he is just as frustrated as I am and it is not helpful. After I blogged earlier the doctor came in to give me an “update”. They had decided to start Vega on the anti C diff antibiotic, the nurse was already standing behind her with the meds in her hand. They did not want to wait for the result of the second sample. The microbiologist had apparently said that it is unlikely the second sample will come back negative and it would be foolish to wait. I really stood my ground (I think..) saying that I am inclined to decline and wait for the sample to come back positive before I agree for yet another antibiotic to be started, seeing that Vega is entirely asymptomatic for C diff. I had to listen to both the nurse and the doctor to lay into me quite heavily about everything from infection control to “it’s going to happen anyway”.
They were nice, don’t get me wrong. But niceness is the worst kind of bullying.
I asked them to give me a few minutes to think about it. Mainly because I needed to cry (again..). This is what I hate the hospital for. The feeling of losing control, of everything escaping my grasp, the trigger happy medication process. The microbiologist says to give the antibiotics, why not? What he/she doesn’t know in their little lab is that Vega had three different antibiotics for the last two days, two chemotherapy drugs and even a shit load of heparin flushes for her central line. She is barely eating again (hospital food as well as no appetite). I asked about side effects but these were easily brushed aside in favour for explaining me the effects of having C diff while being so extremely neutropenic. I googled Metronidazole, which is the antibiotic of choice, and of course there are side effects, vomiting and diarrhoea for one, and of course neutropenia. All the antibiotics that Vega is receiving while in hospital cause neutropenia. Just like her chemotherapy drugs. And low neutrophil counts mean more likelihood of febrile neutropenia, meaning more antibiotics, meaning more time till the counts recover and the febrile neutropenia stops. We are running in circles.

The real worry of course is that Vega actually does have C diff. If she does I am thankful that it is asymptomatic, but it would still mean we might have a lengthy hospital stay ahead of us. We are talking 10-14 days. I can’t even write that without welling up again. In moments like this I have an ache in my chest. This feeling that nothing will ever be normal again. It’s not the days in hospital, but the fact that my beautiful little girl is three years old and has already had so many antibiotics that her body is susceptible to contract an illness like C diff. That she is being so bombarded with all this stuff and that it seems as if no one ever thinks twice about it here in the hospital. I only imagine a homeopath or naturopath and what impact even one single antibiotic can have on the balance of the body from a holistic point of view. So every time the doctors come to me with another medication I feel like I am consenting to Vega being destroyed from the inside out. And I am her mother. I should be able and allowed to protect her.

So what did I do, I hear you ask. I cried my cry and called the nurse to give Vega the new antibiotic. I called Ray a while after and he was angry with me. Not only am I battling with my own conscience but I have to justify a choice I am entirely not sure about to him. I hung up on him. I know I shouldn’t have but I couldn’t deal with it. Now I am blogging to you all because I am sad and have no one to talk to. I would only cry anyway.

I guess I could go on the entire night. While I am watching bag after bag of antibiotics dripping into Vega, here I am in a sleepless vacuum of sadness and guilt. My plan is to keep asking for the result of the second poo sample every time Vega’s medication is due. If the sample comes back negative it will be stopped. If it is positive we will be 12 hours ahead of the game. Or maybe 24 hours as it is the weekend and microbiology doesn’t work that fast on a Sunday. Wtf! See why this is so f***ed up? Because it is a Sunday a little girl potentially has to have more doses of this antibiotic (I was going to swear again..) and no one blinks an eye. And what can I do? What should I have done? I really wish that I would have someone here with me all the time, a mixture between my mum and a very knowledgable holistic oncologist, without any agenda, with great empathy and who is only entirely and absolutely interested in Vega’s interests.
But I guess I will have to do.

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5 thoughts on “Readers beware- I am feeling blue…

  1. Oh Kathi, my heart aches for you. I can feel your pain through your words and I understand part of how you are feeling. You can only do what you are doing, keep on caring, keep on fighting when you need to (but why why why should you need to?!), keep on trying. So long as they know you as the mum that asks these questions, they will be on guard not to just shove every medication they have in to poor little Vega.
    It’s so so hard. It shouldn’t be such a fight but it is. You are doing so well to keep afloat, even if it feels as though you are sinking sometimes. You might not be swimming for land yet, but you’ll get there. Sometimes you just need to tread water for a while before you move on again.
    It *will* be over at some point. Just because the end isn’t in sight does not mean there’s no end to this.
    I wish you werent lonely. I wish I could come over there now and be your shoulder to cry on.

  2. Oh my love – you didn’t have a choice!

    OK – listen up – you are one of the best parents I have met in a long time, you are so there for all of your children come what may, you are reflective and thoughtful in your parenting and with all the madness going on around you, you stay strong and steadfast for your beautiful children – all of whom are still very happy, secure little things…that doesn’t all happen naturally, that happens because of who you are and how amazing you are as a parent.

    You are a mother, and of course you want to protect your child, but in hospital there are times as all of us know who have been in hospital with sick children, where you don’t have the experience or knowledge to fight, and where the chance that you might be making things worse is too much and you have to give in to the doctors – it’s such a hard position to be in, but it really does sound like you didn’t have a choice honey.

    Big big hugs to you and Vega.

    P.S Sally looked amazing tonight – so beautiful and so happy, I’ll put some pics up for you asap.

    Hang tough home girl….remember the hood it strong in you…west Norwood/Dulwich girls are rough and tough and made of strong stuff…(but also allowed to cry) ;o) x x x x x x x x x x

    Lottsa love x x x x x

  3. oh Kathi – I want to jump in my car and come sit with you just so you would know you are not alone, even if i could do nothing – it is simply relentless, agonizing and truly fucking awful. i know the routine for myself so well – but consenting to your little bear is beyond difficult. it is so hard to place yourselves in medics hands, to even know what intuition is in the tug-of -war and distress and to believe that such toxic shite will help and heal. i like you sobbed many a time at the desperate feeling of having no control and struggled to find a place to settle and surrender to the process – and i by no way mean that in a sense of giving up or giving in, just allowing a place of what seems like no control to be. my heart truly aches for you, the torment of every friggin medical term, side effect etc etc – wishing you hadn’t have to become an expert in it all. the ‘trap door’ cycle as i call it – every time it seems there is a little stability, a little vague sense of adjustment, BAM a trap door opens and down we fall. I hope you can just settle for a bit and let the ticker tape in your head stop for a while and just be. such tremendous loss needs to be cried for – you will get through these next hours and days – and reach another depth of coping that you didn’t know you had. So many many people love you and wish they could give resources to you. So i join you in some tears tonight – and hope your little bear sleeps and her body finds new strength.

    I do hope Vega can eat a little something – it helps with the metronidazole and may lessen the vomitting

    I am always up late if you ever need an ear to moan, vent, scream or cry in. sending you a big hug, and tissues xxxxxxxxxxxxxxxxxxxxxxx

  4. Kathi, once the medics have decided on a particular clinical protocol and ask for your consent they are not really giving you a choice. So you did your best to fight Vega’s corner and you shouldn’t feel any guilt over “your” decision as it was never really your decision to make. Unfortunately, when we are in hospital, we are in the hands of the “experts”.

    In all honesty, cannot I say that I am a believer in holistic/homeopathic remedies, they don’t make sense to me scientifically but neither am I an advocate of being dependent on drugs if unnecessary so I know where you’re coming from on that one. I really hope the second sample comes back negative and they can stop the antibiotics soon. I’m also mad that you have to wait longer for the results because it’s Sunday [WTF!!!]. I hope you and Ray are okay … this is so hard for all of you but you need each other. And I hope Vega will find something with at least a bit of nutritional value that she wants to eat.

    And don’t forget, you are a fantastic Mum but you’re allowed to embrace how you’re feeling and to let it out when you need to.

  5. Kathi I feel for you and really wish I could do something to help. I am a phone call away when you need it. I would have been happy to speak with you last night although I know I’m not a mixture between your mum and a homeopath 😦
    I think you are an amazing person and an amazing, super caring mum so don’t doubt that for a minute.you will be out of there soon and pretty soon you will be able to put all t this behind you inshallah. Xxxxx

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