Anyone else with a TOF baby??

[Bumblebee2408]

Apologies I've not been on much the last few weeks here not sure what I've written in previous posts so thought I'd update fully all that's gone on recently..... Jess had more surgery on thursday this was yet another stretch of her oesophagus ahes been having these every 2 weeks since christmas. I've finally booked an intense week long driving course to get myself driving as I need to now. I've left work recently to look after Jessica when she's finally home.

The government here in the UK are funding some care for Jessica so we're hopefully getting 4 nights a week respite so I can sleep as she is pretty full on 24/7.

She is fed via a pump by a gastrostomy tube in her tummy. She has 6 hourly nebulisers (currently sometimes more often if she's unwell). She then needs her Tracheostomy suctioning when it gets clogged with secretions...... in the mean time my 2 year old boy is a typical little boy he's into climbing everything and I mean everything, playing with cars and trains and because of those Loves anything to do with Thomas the tank engine (assuming you guys know who he is? and he's not a completely British programme like it was when I was a child) he talks non stop now... he can do at least 3 word sentences and always says Please and Thank You's. Bless him he's so good. He can also count to 15 without any prompting at all.

What else ohhh yes because we need night carers they want Jess to have her own room. Now we thought she could share with Jack before all this so now our local council housing association are trying to find us an affordable 3 bed property. Which is good but a long process and part of the reason we can't bring her home.

So all in all busy life and a stressful time but we'll worth it once we're finally home with her.

Being a TOF mum is hard and I hope anyone else who does come on here for support will find some of this helpful xxx

 

[LaughOutLoud]

You an your family are always on my thoughts. You sound much more better Hun an I wish you all the best. I'm glad you're going to be getting the help an some much needed rest.

 

[Bumblebee2408]

Thank you laughoutloud it's been a long year but it's been sooo worth every hard tearful minute of it. Xxx

 

[Bumblebee2408]

Just to update we get the keys to our new house tomorrow 😄 hurrah ..... we managed to bring jess home for a few hours for a birthday party on oxygen she had a bounce on the bouncy castle and everything. It was amazing to have her home.

Hopefully we'll get her home soon xxx

 

[Bumblebee2408]

Oooh to add she's pretty much been on oxygen most of the time.... only low amounts but at times she has gone off colour blue again. I'm dreading something going wrong with her.... Hopefully it's just cos she's been a bit poorly lately. Xx

 

[sethsmummy]

Oh Hun I'm sorry I've been mia lately. What fantastic news that they have found you a house!!! Have you a date for bringing her home properly now or is it still a waiting game. I'm so so happy she is doing so well. Cannot wait for the day you write your all together as a family xxx

 

[Bumblebee2408]

No date as yet but we're getting there hopefully we can plan for one soon.

Bless her won't but soon though as she's struggling with pneumonia at the moment 😟

 

[sethsmummy]

oh no im so sorry hun poor poor girl pneumonia is horrible xx

 

[Bumblebee2408]

Yes but she's quite happy and just ploughing through it bless her.

I've started painting the house and my kitchen is done xx

 

[Bumblebee2408]

Hello everyone....


We'll good and bad update.....

Good update: after 466 days in hospital...... Jessica has finally come home hurrah 😄😄

On the down sound last month she finally got her horrible nasal tube out for a month...... only to have surgery today and have it put back down.

Poor bubs but we're home 😁😁😁😁 YAY

 

[LaughOutLoud]

Congratulations on bringing her home finally. You An your family really deserve it, after such a long, difficult journey I pray things go much much smoother for you all x

 

[Abii]

I am sooo happy to hear that she is finally home! congratulations, she is such a strong girl and you are such a strong mommy I think about you guys a lot even though I don't login much anymore

 

[Twag]

I just read your whole story and wow I am so pleased she is home now and you can all be a family together you are such a great & strong mummy

sending your beautiful girl all of my best wishes for the future

 

[sethsmummy]

hey hun its been so long since i was on here.
I am so so happy to see that you have finally got to bring her home! Im so sorry shes had to have the tube put back down again but hopefully it wont be for too long.

how are you all doing? I really hope your all keeping ok xxx

 

[Bumblebee2408]

Hi everyone...... thank you all for your kind words itd been hectic since january. So update:

Her tube is still in place. She's now having steroid injections into her Oesphagus to help strengthen it. We prat that works or we may have to figure out a new plan. She's generally on oxygen 24/7 now which is frustrating we can't seem to wean her down but she's coping well on it. She is finally tasting bits of puree (at almost 18 months old) 😂

Jack is amazing he's learnt to help me look after her and at two and half years old can out the attachments on her Tracheostomy when she pulls them off. He helps me suction her Trachey tube out when she needs it (under supervision of course) he can count to 25 with no help.... can sing the ABC song.... recognises colours and shapes easily and we're practicing writing already with wipe able books.... he also non stop talks in full sentences now he's amazing even with all this stress he's ahead of where he should be at his age.

As for Jessica she's now crawling and can stand aided being at home is bringing her on developmentally and she is starting to learn makaton sign language with us so she can communicate as she hates the speaking valve in her Trachey and won't tolerate it.

Hopefully I'm not making this complicated cos I know what all the kit and stuff we do with her means 😂

We're still off for surgery every 3 weeks at her major hospital including an over night stay which is a bit of a pain but this is ongoing for the future as far as we can tell at the moment. Oooh and the poor mite is just getting over chicken pox 😣

That's all I can think if at the moment but I'll try and update again soon

Thank you all again xx

 

[sethsmummy]

Hi my lovely! I am so sorry I went MIA off of BNB again! How have you been? How are Jessica and Jack? xx