Shingles

This blog post will all be old news, of sorts, but it took me a few days to digest the last week.

We went to Kings on Wednesday morning because Vega had a rash on the back of her thigh. She has actually had the rash for the last three days, but it didn’t look like anything to worry about until Wednesday morning, mainly because two of the spots of the rash looked very infected. This is not totally unusal for Vega, who more or less constantly suffers from some minor small infections- nailbeds, spots and grazes, or blisters from shoes often get infected. I usually treat it with some topical antibiotic cream and after a while they would heal. These spots on the back of her leg started to look evil though, I knew I needed some advice about management.

What began around 11am in the morning, turned out to be one of our most epic admission procedures yet, a frustrating display of utter incompetence.

New school year seems to go hand in hand with all new junior doctors on the ward. We were seen by three doctors (all an hour apart from each other) and no one knew what this rash was. We were then referred to Dermatology across the road. I was fuming already at this point- Vega was annoyed, Alys was hungry and it was Lyra’s first day back at school and I already had to call in someone else to pick her up!!

After another two hour wait at the Derma clinic we were finally seen by a doctor, who also had no clue so she called her consultant. The consultant decides this must be shingles, writes us a prescription for an antiviral medication and wants to send us home. I mention to her that I would like to check with our Hematologist because I am sure there is some sort of protocol to treat children on chemo with shingles. The consultant acts a little cheesed off because I question her decision and says “well if I had a child with shingles, the hospital would be the last place I would want to be”. Thank you very much.

Against advice of this very sensible consultant (not) I returned to Toni and Guy ward, and yes of course Vega needs to stay, she needs intravenous antivirals asap, as well as antibiotics for the two severely infected spots. And so after eight months without hospital stays we were inpatients once more. The evening continued as the day began, everything just seemed a real struggle and I was fed up before we even got into our room. The nurse on duty that night told me the dermatology consultant could have killed Vega with her advice to go home. Wham. Bang. My head hurt.

Vega was actually relatively well all along, no fevers, and very little pain. The main thing for her was the itching which required two types of antihistamine.

The main thing for me was relaxing in an environment where half of the people did not know what they were doing. It puts me on mega edge and I become stressed because I feel I need to do everyone’s work. It began with that stupid admission and continued the following night when I was actually at home and Ray stayed with Vega in the hospital. Ray called me around 11pm to ask if Vega had some pink oral medication. Apparently the nurse had brought a fairly huge syringe with pink stuff in it, which Ray was told was Vega’s antibiotics (she was not on oral antibiotics, but received intravenous antibiotics). Ray said the syringe was huge, like 200mls. It has since turned out to be a huge overestimation on Ray’s behalf but it was around 30mls which is a very big amount of oral medication, especially for a child. I was at home and totally freaked out. Incidentally Vega was screaming in the background, with pain in her leg, suddenly, after having no pain before. I told Ray to refuse everything until he has spoken to a doctor. I asked him what she has had, intravenous as well as oral up to then, but Ray is not quite so up to speed with all of Vega’s “gear”. So he was freaking, I was freaking, Vega was freaking. I actually called Beccy, in the middle of the night to come and sit with the other girls because I thought I’d have to go to Kings now to sort things out. I was so worried they were going to give Vega something she wasn’t supposed to have with dire consequences. I think I lost it a bit then. Ray reassured me that he was in control and that he would sort it out. I found it so, so hard to accept it that night, but I did, called Beccy back and told her she wouldn’t need to come and went to bed, rather restlessly falling asleep in the early hours of the morning.

The next morning Vega was fine and just as he had promised, Ray did sort it out and looked after her. It was thanks to his vigilance that Vega was not given something that wasn’t prescribed. Apparently an investigation was opened about the medication administration fault during the night. Today our district nurse urged me to make a complaint with PALS, the patient advice and liaison service. Vega could have been overdosed she said. I knew that, which is why I was so freaked out during that night.

We did escape the hospital fairly unscathed (this is not a joke), four days after being admitted. Vega was and still is well. She is on antivirals and antibiotics here at home, orally this time, a crazy schedule that requires her to take the meds every five hours around the clock, so I have to wake her during the night. It is a little tiring.

The worst thing for Vega is actually having missed her first day at school last Thursday- she was gutted. She kept telling the nurses in hospital that she will go to school tomorrow and they all just looked pitifully at her and said “no you won’t Darling, sorry”. She will have to wait until next Monday for her first day to come. The irony is that now she is an infection risk to other children because they could catch chickenpox from her if they would get in contact with her rash. As for Alys- we shall wait and see in a few days if she will come down with the pox.

All this palaver also meant Vega couldn’t start Maintenance Cycle number 5 yesterday. I was on the phone to the Marsden rearranging appointments, feeling incredibly inconvenienced by it all, having to go twice just to see the consultant because she wasn’t available the next time we are there, bla bla bla. I actually called three times, trying to figure something out that would suit us better, would allow Vega to stay in school… when I hung up I thought “Jeez Kathi, this is cancer, this is chemo, not a dentist appointment. It is not convenient however way you turn it” The last few months, our summer holiday and our lack of hospital stays have given me a sense of convenience. Vega’s treatment began to just fit in with us, or maybe we started to fit in with the treatment. The last week was certainly a stark reminder what it actually is we are doing here. That Vega is vulnerable, that doctors and nurses make mistakes. That we are not out of the tunnel yet.

But what does that mean for me? Once again I am feeling the heavy burden of overseeing this operation. I hope that I shall never have a lapse in concentration. Oh dear.

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4 thoughts on “Shingles

  1. Oh Kathi, how stressful!! And I certainly think you should file a complaint about the dermatologist, my God! Well done to Ray, you can leave him in charge a bit more now 😉

  2. oh Kathi I just cried so reading this post – how awful for you all, and for you to have such excessive additional amount of stress! not to be able to trust the ‘professional’ at times such as this, one really does not need. Bless the gut feelings we get as we are so often bloody right!!
    Big hug to you all

  3. I keep having a picture of those sentry meerkats -hyper vigilant and yet longing to bask in the sun. So many months free of admissions and as you say – BAM back on duty – the reality of holding it all together!! The finely tuned ‘gut’ to monitor, assess, notice and question and make a point to other professionals – such a shame that you have to be so aware all the time because others dont know some of the implications.

    I’m not sure with cancer that the vigilance ever really goes away – maybe turns into a real asset to trust yourself.

    i panicked this week at having missed a blood test – what did it mean etc etc then remember i have moved to 2 monthly tests!!!! I just haven’t adapted to that yet.

    bless your wee vega for sticking it all out in the best way she can.

    hugs n hugs n hugs to you – and courage to make a complaint to PALS xx

  4. As if you don’t have enough to worry about. Sadly, I’ve found you need to become an expert yourself given the state of the NHS. It’s scary to think about what could have happened. Sendings hugs to all xx

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