Grace was up early and ready yesterday to have her port accessed by the nurse, (that meant she had a shower and washed her hair) its no fun when you can't go in the bath for 3 weeks.
Her port was accessed in seconds without problem, as per usual. Entinox gas is the best thing that Grace could have discovered, she never ever complains, cries or flinches when accessed since she has been using it.
We went from there up to the hospital to have the first dose administered (by me) its standard practice when a family is about to commence a course of IVs and also the first dose is always done in hospital to make sure if there is any reaction, then we are in the right place to deal with it.
We went through the T.T.o's whilst Grace was on infusion (eating lunch and watching the Wizard of Oz might I add), and once she had been flushed off we were free to go. It was 1.00pm (shock) I can't believe how quickly we got in and out.
I was planning on going to the gym this morning, but Grace is feeling a bit sore and sorry for herself and needs Mummy around, generally so that she can moan at me and boss me around. Also I have a lot of jobs to do, which includes masses of paper work to sort out Faye's student loan, they consider that they are adult enough to have a huge loan, but have to get the parents to fill it in.
Its 'Take Mummy shopping day' today also, so that should be fun and Grace has the party of the year to attend at 4.30 (The Goth party). Her outfit has been ready for ages and its probably gathering dust, still it should add to the effect. I will blog photos as everyone has asked for a photo. The worst thing is that she wants colour in her hair and she only had it washed yesterday and then can't have another shower until 25 July.
The nurse asked us to make an appointment to see Dr S when treatment had finished because he wanted to discuss Grace with us when she wasn't around. Mark and I feel that he probably wants to talk about a possible broncoscopy and lavage, as I said before he wanted to find out what the cause of her problems were, and it wasn't showing up on any cough swabs, but Grace wouldn't mind hearing any of that as she knows whats going on, but then it makes you wonder what he feels he may need to discuss that she wouldn't benefit from hearing......
About Me
- Gilly
- I am a parent of a child with Cystic Fibrosis. I don't go to work anymore. I was an administrator for many years but now feel I want to spend my time caring for my daughter. I have raised money for the cystic fibrosis trust through lots of channels from baking cakes to running the Hydro Active Challenge, and will continue to raise money and awareness as long as I can.
3 comments:
Aww poor Grace, nothing quite like your mum when feeling a bit under the weather is there, can't wait to see her in the goth oufit.
I'm going to attempt the Jamie Oliver choccy things tomorrow as I've had a right sweet tooth on me lately, as for the poker Gilly, is that the one where you have to have 3 cards adding up to 21. I'm useless at bluffing and can't do a serious face to save my life, I'd get robbed blind.
Long time, no big chat, must catch up soon.
Take care
Sue xxx
If your anything like me, you will eat about 12 in one go, honestly I can't stop once I get going.
I think you are thinking of pontoon (or however its spelt) poker is the one where you are dealt two cards and you all play on the turn of another five cards to make your hand seven....oh well I'll still get robbed blind anyway lol!
Sorry to hear Grace is back on IV's again. Doesn't seem that long ago you where talking about her going on them before.
We have come to the opinion that bronch's are quite often a good thing judging by what was taken out of Sas's last one. No amount of physio would have cleared it.
Grace looks great as a goth BTW!
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