Well today was round two of port flush. I am currently working nights so Ian took Sophie today.
He managed to get her emla cream on this morning and off they went to the hospital.
It was decided that Sophie would have midazolam (sedation) prior to Bertie (the port) being flushed. This was administered via her mic-key button not long after she arrived on the ward. Sophie has had this quite a few times before for various procedures so Ian knew exactly how she would behave and when it would be the right moment for the port to be flushed. Sophie gets very happy on this drug, giggly and almost like she is drunk.

Once the drug was given it didn't take too long to start working and after about 10 minutes Ian told the nurses he felt it was time.

Sophie sat on her dads lap, her CF nurse crouched in front of them and the other nurse stood to the side stroking her hair. Sophie was a little unsure to start with and did start to cry but as soon as the port was accessed she stopped and allowed her nurse to flush the line with saline and heparin. Job done!

Sophie apparantly wouldn't remember any of this but she has happily told me all the details and is very calm about the whole situation. She has told me all about 'Bertie' having a drink and everybody she has seen today. I was worried this way would make it worse for her but it was exactly the RIGHT way to do it.

On the plus side, it has solved the button change dilemma as this is going to be how her port is flushed monthly for a little while so I can do her button change at the same time as her port flushes, result!

In other news Sophie is still struggling with her bowels so her CF nurse has upped her laxative dose until we get things moving properly. It's not that she is totally blocked as there is some movement it just is nowhere near enough. She is still averaging only going once a week or sometimes longer.
Hopefully once we get this sorted out she can just get on with enjoying her life!

I hope everyone is well and it is so nice to blog about something positive for once!!

Take care all

Full blog

xx

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Gemma, mum to Sophie (3) WCF, DF508/D1152H and also born with TOF/OA.

Lungs behaving badly.
Will my child ever eat?

Edited: 07/23/2010 at 01:16 PM by Sophiesmum

Gemma- I am SOOO happy to hear that everything went so well for Sophie this time around! The sedation sounds like a lifesaver for sure I am just so excited for you all!!

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Amanda
Mom to Piper 8yowcf ddf508

Yaaaay! I'm glad it worked and that there was no undue stress and trauma! Yaaaaay! Glad to hear some good news!

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Tami

mom to Isabelle 7 yo no cf (She is smart, funny, loves dance and piano lessons)

and Emily 4 yo w/ cf (F508, R533x) (She is smart, funny, SASSY, stubborn and active. Loves to bother her sister and argues daily over...pretty much everything).

Courage is not the absence of fear. Rather, it is the judgement of knowing when something is more important than fear. The courageous may not live forever, but the cautious never truly live.

Hi both, thanks alot.

Massive relief and one less thing to worry about!
It is nice not to be ranting too

xx

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Gemma, mum to Sophie (3) WCF, DF508/D1152H and also born with TOF/OA.

Lungs behaving badly.
Will my child ever eat?

Hi Gemma,

Wow, It was so good to read the outcome of Sophies port flush !! I love that her port took a drink lol how cute is that ??? It's great that now you can do the button change as well !! ...

On the movement thing, is Sophie drinking lots of water ? Im sure its very hard to get a little one to drink enough so maybe as she gets older that will change..

Take care joni

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Joni 58 y/o f w c/f Married 20 years, Mother of 4 sons, Mima to Richard (4y/o) & Samuel (born 3/22/10)

Hi Joni
Thanks alot!
Dont know whether I ever mentioned but soph is oral phobic due to reflux and is completely fed via mic-key button. We increased her water flushes just incase but still no decent results yet.

x

-------------------------
Gemma, mum to Sophie (3) WCF, DF508/D1152H and also born with TOF/OA.

Lungs behaving badly.
Will my child ever eat?