Hi all

I thought I would start a blog about Sophies life with Cystic Fibrosis. I already have a joint blog, highlighting the troubles Sophie experiences regarding her TOF problems. They can be found by clicking here

May 2007

Sophie was already in hospital recovering from hours of major surgery after having her TOF/OA repaired.

We had a lovely doctor meet us at the door one morning to say that they had had some results from the guthrie test. Sophie had Cystic Fibrosis, she was 3 weeks old.

Our world felt like it was caving in, we thought we were going to lose her during the surgery she had had(7-8 hours), but she came through it after battling sepsis and a respiratory arrest when they attempted to wean her off the ventilator. Here both Ian and I were faced with a whole new demon and Sophies fate was sealed. A life time of medication and hospital stays.

To say we were heartbroken was an understatement, but things would improve. Sophie is pancreatic sufficient and this means she doesn't need to take any enzymes to help her gain weight. This may not last forever but it currently means she doesn't struggle to gain weight and this gives her a good buffer when she gets a chest infection.

Fast forward to July 2010

Sophie is now 3 years of age, she still isn't eating due to horrendous reflux caused by her TOF (see other blog) and is fed via a mic-key button mainly but is taking more and more orally. She has recently had a port fitted as her veins play hide and seek and after 3 admissions for IV antibiotics which have caused her to develop paediatric medical traumatic stress (PMTS)(basically has heightened stress responses to anything medically related), the port was the way forward and we have recently completed our first set of home ivs. Sophie has cultured pseudomonas on and off since 6 months of age but we managed to get rid of it for 14 months. Recently it returned again but she has had 2 clear swabs to date. Sophie currently takes colomycin twice daily and pulmozyme once daily medication-wise and has twice daily chest physio.

Full blog

Take care all x

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

Lungs behaving badly.
Will my child ever eat?

Edited: 07/06/2010 at 12:46 PM by Sophiesmum

Sophiesmum, just wanted to say hi. I sometimes check the CFTrust forums and have seen your posts. I hope Sophie is doing very well. Does she do the every 3 month IVs?

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Teresa, mom to Todd(wocf), Andrew(wocf), Christopher(wocf), Olivia(wocf), and Shelby (wcf df508 and 2184insA)

Hi Teresa

I guess I should of added we are in the UK Yes I post frequently on our boards and only very occasionally on here. Currently Sophie is only having ivs when needed. Basically we are letting her symptoms and culture results dictate when she has ivs so at the moment, no regular ivs. We have discussed just giving her regular ones maybe once a year now she has the port, but as her pseudo status is slightly in limbo there are no plans for regular ivs at present until we know if it's sticking around for the long haul!

Thanks for your message and I hope your children are all well and especially Shelby.

Take care
Gemma
xx

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

Lungs behaving badly.
Will my child ever eat?