TOFS forum

Families in Berkshire or surrounding areas

2010-09-07T20:29:50+00:00

I am a newbie on here and was just wondering if there are any families in Berkshire or the surrounding areas?

Hope to hear from you soon

Edinburgh Zoo

2010-09-06T20:54:27+00:00

I am taking my son Reilly to Edinburgh zoo on Saturday for his 2nd birthday if anyone wants to meet another family. Reilly was short gap joined at Yorkhill, Glasgow day 2. PM me if you are interested and we can arrange to meet, I know that I found it a great help to meet up with another TOF family and not have to spend the day explaining. Hopefully christophersmum will be coming too if I organise it properly!!
Carol

tests ordered from respiratory consultant

2010-08-02T21:51:45+00:00

has anyone elses tof child had a ct scan, overnight sats test and a sweat test for cystic fibrosis?

peter also has to undergo tests to see how he fights infections,

Luke’s baby brother arrived :-)

2010-08-20T07:25:08+00:00

Hi Everyone.

I think I met quite a few of you at the TOFS childrens party whilst I was heavily pregnant! (Of which was fantastic and thanks to TOFS for organising these) Well we are nearly 3 months late with this announcement as we’ve been so busy!

Baby James arrived nice and healthy on the 5th June. The labour was so reminiscent of Luke’s (pretty horrific) and the first feed was terrifying but all went fine and thankfully James had no problems. Luke absolutely adores his baby brother and James is doing really well. He weighs much more than Luke did at 6 months despite being born at roughly the same weight. It’s so odd having a large baby when Luke was a tiny dot. He’ll be overtaking him at this rate

Luke is doing great at the moment (touch wood). He had his last 999 choke when I was 36 weeks pregnant (that was interesting throwing him over my knees with a bump in the way). So he still struggles, but usually when he has a cold. So he is now on Cefalexin as a preventative. His weight is great, luckily he loves his food. We are discovery new snack that he can manage. Just thought I’d share in case they give anyone some ideas. Dairylea dunkers and Crackerbread with various toppings, a new one being egg mayonnaise. Always on the look out for new ideas!

Anyway I just wanted to share our good news and I hoped this would give others some hope that you can go on to have healthy children. I was so grateful to those who encouraged us when I came to the forum asking ‘when did you feel ready to have another?’

Looking forward to future TOFS parties to see you all again.

just had second baby

2010-09-02T10:13:25+00:00

hi just wanted to share the news that i have had my second baby ,a girl,and all is healthy and well no tof and not premature!I was slightly nervous about having another baby after having a prem tof first time,Although i still loved having my first baby,Harrison despite all the problems and wouldnt change him for the world it is definatly easier this time round and Harrison is a great big brother to his little sister.

Southend-on-sea Essex TOFS

2010-09-04T18:23:28+00:00

Hi, maybe a long shot.

Our local paper(Southend echo) recently ran a short article regarding a local lady that had a TOF baby. The article mentioned this website and the lady contacting it!

If this is you please get in touch as my partner Natalie would love to chat, we know of no other parents locally that have had a TOF/OA baby! It would be great for both of us!

Please send email or private message if you get this!

Thank you

Dave

TOF/OA Aftercare

2010-06-24T11:45:03+00:00

My partner, Natalie gave birth to our handsome son james (200310) 5 weeks early after being diagnosed with polyhydraminos which gave her alot of discomfort throughout the pregnancy. He was diagnosed with TOF/OA and larnyxmalachia, which is now trachemalachia with added septacemia (excuse spelling). Any ways he had the repair and two dilatations at Chelsea and Westminster hospital. After 7 weeks he came home. The first day home we had to call ambulance as he choked really bad but was ok, so sent home. I got myself some training in resus and choking which was rushed as I had the 2 kids with me and had to pick the eldest up from school.

My partner due to all the above was in a mental hospital suffering post traumatic stress and post natal depression at the time. The next choking episode was caused by the bloody health visitor telling us off about his weight gain or lack of. I had to give mouth to mouth and lucky enough I saved his life. The hospital said she was wrong and reduced the feeds and frequency.

This settled him but about 1 month later he had a contrast that indicated he needed another dilatation. I went back to work for a week but before we made it to the appt at chelsea he had a major blue moment without feeding (in his chair) and I had to give mouth to mouth again and chest compressions, luckily enough the ambulance came just in time to finish the job (Thank the gods). Anyway he is in great ormond st at this time under going lots of studies and investigations, this whole saga is putting a huge strain on our lives, I have no car, 3 other children and have been off work for 3 months +. I may lose my job. Also the CPA and normal police (child protection agency police) also had to come round to take statements etc which was frustrating adding to the pressure.

My partner and I are starting to feel let down by alot of people that have been involved in this. We rec’d no info as to the risks of losing his life because of the choking/blue moments, it wasnt diagnosed in the preganancy thus not preparing us for the stress, bad advice from the health visitor and lack of training/support at home?

Is this normal or have we missed something? We are trying our best to keep things running smooth for our 3 other children that are all quite young. Currently nat is staying at GOSH as its the only option we have and it is killing us. (by the way GOSH is top notch and more supportive than our local and C&W hospital)

This post is has no real direction more of a rant! I am still shaking inside from having to revive him the first time. The emotional stakes are quite high having to do cpr on your own child!

is this normal? We just want the best for our family.

2 tofs meet

2010-09-01T21:12:46+00:00

Today, for the first time, myself and Frances have met up with another tof family.
And what a great time we have had!
Some of you may know from the forum that Fran and Hugo Smith were in ICU at RVI in Newcastle together.
We knew each to say how’s he/she doing. We got discharged, end of story - maybe not!
Whilst I have bn a member of tofs for some time, kim has only joined this yr and she pm’d me to see if it was the same Jayne & Frances. It certainly was!
Since then we have pm’d thru tofs and more recently become facebook friends (scrabble demons!).
Then Kim decided that herself, her luvly husband Dan and Hugo were going to come and visit!
They visited the hosp first, saw some familiar faces, and then came to us in Durham.
I know this sounds boring but am going to tell you anyway! had coffee, whilst the children got used to each other! Went to local park, then to local hotel and sat in garden and had drink, then back to my house for a picnic/snack tea.
Fran ate better than i have seen her do in ages, she was loving the tesco beetroot salad!
Unfortuneately my house is too small for them to stay here so they are at the local premier inn for the night, but tomorrow we are going to go into durham before they head off back home to bridlington.
Hugo is a gorgeous little boy and my little Fran was so well behaved she made me so so proud!
The thing with being with another tof family is that you dont have to explain things, why they are small, why you watch what they eat, why they cough etc etc.
No explanations, no ‘excuses’.

So,Kim, I know you will read this when you get home-here’s to lots more great days!
Jayne x & Fran x

weight gain frustration - help needed!!!

2010-08-13T21:38:51+00:00

Hi everyone,
Just posting because of sheer exasperation. Harrison was weighed at the hospital this week and he has lost weight again. I knew he would have because he had a cold last week, and for some unknown reason he struggles to tolerate his gastrostomy feeds whenever he does. He now weighs 12.2 kg, which is 26lbs 12oz. And he just turned 4 years old. He weighed more than that in September last year! I know we have had the starvation prog since then, and he lost a lot due to that, but aarrgghh!!! He has crashed below the 0.4th percentile again and isn’t even on the charts.
I have just been to buy his school uniform, and really struggled. I mean - most kids are 4 when they start, so naturally trousers start at age four. Some places do age three for smaller kids, so I tried those - way too big.
I managed to discover a shop that supplies the local private school, where the kids can start at two years old in the nursery and wear the same trousers. Any joy? No, even the two-year-old size are too big. Somehow I don’t think I will find anywhere that sells school uniforms for one year olds!!!!!
I might be able to get someone to take up and take in the smallest trousers, but failing that, he is going in grey jogging bottoms! Somehow I don’t think anyone will be able to complain!!!
It breaks my heart to see him next to the other kids his age. He is just so tiny. We have seen the occupational therapists and physiotherapists as he is quite weak due to the lack of muscles. He often drops things like beakers of juice.
I try the usual cream in foods, butter etc, but the weight just doesn’t go on.
HEEEEEEELP!!

Almost constant antibiotics

2010-08-13T16:44:46+00:00

Well, the title of this thread says it all.
Frances was on prophylactic abx from August up until Easterup until Easter, when her resp consultant said to stop them and see how she goes over the summer.
We have been to the dr’s again this morning, been given more full strength abx as the poor little lamb has another chest infection. (and ear infection this time, too).
I have just worked out that in about 18 wks she has been on full strength abx for about 10 of them.
She seems to be ok as soon as she gets a few doses in her but then a week after finishing a course, bam, she needs more (she gets 2 weeks at a time, as 1 week never seems to clear the infections).
Bearing in mind this is meant to be the summer, and the viral season is yet to come, what outlook does that give her for the winter? (re Sioned’s thread the other day).
Has anybody ese been in a similar situation where the prophylactic abx have been stopped, but then it seems they have just been replaced by almost constant full strength abx.
I look forward to hearing anybody’s thoughts and ideas on this.
Jayne x