My Week – 27/02/2016

This week has been a mixture of very stressful and very exciting, grab yourself a cup of something as this is going to be a long one.

I will start of with the stressful part. Monday morning and it is back to school, I manage to get my Daughter up and into school, she was already crying with pain but hoped she might be ok for a bit. I got called an hour or so later to pick her up. My Consultant rang me around lunchtime for an update, and told me to take her straight into A&E for a CT Scan. So off to hospital we went, Mum came with me, we got to hospital and went from one department to the other for various things, before finding ourselves sitting and waiting in the Paediatric Department, where we waited for hours. My Daughter was in pain, in tears and laying across me. In the end my Mum went to investigate (she is good at that) and was told they would be with her soon. We finally got seen, various tests and questions and it was decided not to do the CT Scan, I was just about to hit the roof, but after the Dr explained the reasons to me I agreed. I did insist that I wanted medication for her as she can not carry on in this pain. The Dr spoke to another Dr and agreed on medication for migraine as this would hopefully help the pain, as normal painkillers did not touch it. They gave me 1 days worth and paperwork to take into my GP for a repeat prescription. I also asked about the blood tests she had the week before, and was told 4 out of the 5 blood tests had been lost, yes you can imagine my reaction. The Dr retook the blood tests and promised to phone me with the results the next day.

Tuesday, I emailed school the night before to update on what happened at the hospital and that I would keep her off to see how this medication works. I wanted to get Dr appointment but they were all gone, so took the paperwork in and they promised to speak to the Dr and have the pescription ready for later that day. I gave my Daughter the medication and she actually got up and dressed and came and sat next to me on the sofa and we chatted and had a few laughs. I wanted to cry happy tears, this was the first time since new years eve I have had my little girl back, finally some medication that would mean she could be pain free until we find out what is wrong. Then my GP rang and said he refused to prescribe anymore, so more phonecalls to the hospital, I am now very friendly with my consultants PA. I got a call from the main Consultant as my Consultant was not in, he told me the blood results (all fine), and made up a new prescription for 2 weeks worth which should be ok until we get everything back. So another mad dash to the hospital.

Wednesday, Gave my Daughter her medication before school, and left some with school for a top up if needed. I picked her up at 1pm, this is major as she has not done that length at school, she had a bit of time out when her meds started wearing off, before they gave her more after phoning me. She was shattered the rest of the day though. However, my consultant rang while she was at school, he did not want her on this medication daily, just if she needed it and prescribed more medication that could be taken daily, luckily my parents were in town, so I got them to pop to hospital to pick it up.

I am not sure about this new medication, they really knock her out, Thursday I tried to wake her for school and she could not keep her eyes open, she finally woke up just before 1pm and then felt spaced out the rest of the day. Gave her the tablet earlier Thursday, she woke at just before 12.30pm and felt the same. Last night, I forgot to give her it early and she had it at gone 9pm, but was awake 10.45 this morning so hopefully her body is getting used to them.

Today we are off for an MRI, in one way I want it to show something so we can treat it, in another way I dont want it to show anything.

My husband thinks it could be a migraine and something she is eating is triggering it so not going, so we have taken a couple of trigger things out of her diet to see if that helps at all, not seen any improvement yet.

Now onto the exciting bit, as you will remember our studio took a bashing in the awful weather in January, and the roof came in, we honestly thought that was it. But a lot of hardwork, blood, sweat and tears. It is finished and looks amazing

This was before floor had been cleaned and all the equipment moved back in.

How has your week been, hopefully not as stressful as mine?


Leave a comment

  1. 2nd March 2016 / 12:24 pm

    I really hope you get some answers soon about what is wrong with your daughter. She must be so brave to be putting up with so much discomfort and pain x

    • admin
      2nd March 2016 / 12:27 pm

      Thank you, we were back at the hospital yesterday, but just waiting on the consultant phoning me today, but think we now know what it is, just need him to confirm it x

  2. 4th March 2016 / 11:33 am

    It is so stressful when you want everything to be ok, and your daughter sorted yet it doesn’t seem to get quickly enough! I hope they are able to sort her out soon so she can return back to her previous self x

    • admin
      4th March 2016 / 4:54 pm

      It has been very stressful, I have been a complete wreck at some stages, trying to get listened to, but after a long chat with her consultant yesterday, we a are a long way from her being back to normal, but I feel like we are being supported now. Thank you x

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