Well following on from my strangely cryptic last post, here lies the problem.

Sophie has a mic-key button (gastrostomy held in place by a water filled balloon). This is how ALL of her nutrition gets in. When her surgeon placed it we were told it must be changed 3 monthly, the reason for this is she is quite acidic in her tum tum and if the balloon were to rupture and the tract heal over, due to her extensive surgery re-siting would be somewhat of a challenge.

Problem is, this surgeon is miles and miles away at a hospital Sophie doesn't really attend anymore as she only sees her CF team now. Due to her PMTS, it is near impossible to change her button while she is fully awake as she tenses her stomach so much and also causes her to have even more issues with any procedures.

We were advised by a gastro nurse specialist that Sophie needs mild sedation for her button changes which we totally agree with. Sophies balloon ruptures at approximately 3 months due to wear on the balloon (it turns black and you can see the little holes that have caused it to burst when it falls out). Up until now, Sophie has been due anaesthetics for lines etc at the same time as her button has been due its change, so it normally senses what is happening and bursts just as she is going into theatre (weird but true).

All sounds fine and straightforward?

I have been trying to organise the next change which is due in about a month but I have since been told by the gastro nurse that Mic-key buttons can stay in up to 9 months now. After explaining the situation to her FOUR times she is adamant that she isnt going to change it, quoting cost of the button to me. While I understand from a general perspective this may be the case this one-size-fits-all mentality doesn't fit Sophie.
Cost isnt an issue as her buttons are nothing to do with this particular hospitals funds and when the funding was sorted after her initial operation, Sophie was allocated up to 1 button a month if needed(we never request this many though).

I have spoken to the manufacturers and they have said in some cases they can stay in until 9 months, but the decision must come from the specialist on a case by case basis as everybody is different.

I have spoken to the surgeons secretary this morning who wasn't entirely useful as she said I needed to get the gastro team at the CF hospital to write to the surgeon requesting this information. This isn't going to happen as
1) Sophie isnt actually under the gastro team here.
2) The gastro nurse in question has changed the buttons as a favour in the past and doesn't know Sophie at all.
3) There is absolutely no way she is going to go back on what she has said about the 9 month thing.

I wouldnt mind but I am fully trained to change her button, I just cant get hold of the sedation needed as it is a controlled drug and Soph does need monitoring briefly afterwards. As her CF team have handed it to this gastro nurse, they cant help either as this isn't their speciality.

Havent had a conflict of specialities like this since Soph was about a month old when her oesophagus closed back up (very long story).

I have no idea what we are going to do. We can ride it out and when the balloon ruptures(because it will) travel the hour and a half round trip to her hospital in the hope someone is able to pop it back in with sedation before the tract closes or try and get it in ourselves risking making her issues much worse and Sophie losing any trust in us.

I wouldnt mind if it was just there for top ups but this is currently the only way she gets feed and fluids.

Aaaarrrgggh, i've found a lovely wall with my heads name on it, please excuse me for a moment while I go and bang against it.

Sorry for the outburst, so fed up of simple things being so difficult.


Full blog

x

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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: 07/12/2010 at 05:13 PM by Sophiesmum

Hi Gemma,

I can hear the frustration in your voice & dont blame you one bit !!!

I dont have any advice on the buttons, but I know many mom/dads here do.. Maybe you can post a question in the family and/or adult section...

I cant believe your social worker at Sophie's CF center (if you have one that is) cant be of any help to you...

I hope you get it all straightened out ASAP !

Take care & keep us posted 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)

Poor Little Sophie....I hope you have a solution to your problems soon.

As for Adam (15) when his button needs changing we just deflate the ballon pull it out and lube up a new one and insert it and fill it back up. He has never needed sedation to change them. His almost always last at least a year or so. He has had a button since he was about 4 or so.

I would talk to the social worker so she/he can help out.

Let us know how it goes.

Peace

Ann

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Hello and thank you both for your lovely replies.

We dont have social workers involved in CF care here in sunny England. We do have a wonderful CF nurse though who I will be pouring my heart out to next week at clinic.
It's the frustration of it all that is driving me insane.

Ann, the problem we have with Sophie is changing the button traumatises her due to a stress disorder she has developed from too many medical procedures. She tenses her stomach so tight that it would cause too much damage to the peg tract to get a button back in. She is improving, but for the time being sedation is the only option. I will happily change the button myself but need the sedation giving and this is where the problem is occuring. We just have too many people involved in Sophies care and it seems to be causing a right old case of treading on each others toes. Politics!

I'm sure we will find a solution soon but I just had to vent yesterday. For that I apologise.

Than you both again so much

xx

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

Lungs behaving badly.
Will my child ever eat?