Anyone else with a TOF baby??

[Bumblebee2408]

Ps see profile pic for my new photo of my babies together after our outing today

 

[Abii]

Aw they are too adorable! I'm so happy to hear that Jessica is doing so well and that you guys were able to have a nice day out hopefully it just keeps getting better from here

 

[sethsmummy]

Omg I could do a little squeel how happy I am for you! I can't believe she finally got to go out for the day! this is exciting stuff!!!

 

[sethsmummy]

Oh and what a beautiful photo

 

[Bumblebee2408]

Thank you ladies it felt amazing and that photo brings a tear to my eye every time I look at it my kids are amazing xx

 

[LaughOutLoud]

Oh wow! That's a beautiful picture, God bless X. I'm also happy to hear you were able to go out for a family meal together, that must be such an amazing feeling...I pray that things continue to look up for you all x

 

[sethsmummy]

your children are definitely Amazing and so are you! how is she doing hun? I hope she is still surprising everyone and doing well xx

 

[Mrs G]

Hey
Oh my goodness, she's doing amazingly well. So chuffed you had a lovely family day. Normal is something we all take for granted.
Keeping everything crossed she keeps doing well.
Xxx

 

[Bumblebee2408]

Hi everyone thank you so much for thinking of us.

She's doing really well she got really upset the other day and didn't go any shade of blue so looks like the Tracheostomy haso done the trick... I'm just getting no sleep with her atm.... I'm living on ward with her in hospital.... she's pump feed every 3 hours (over an hour) the pump needs flushing before and after and setting up and taking away each time... she also is sectioned at least once an hour and she has a chest infection so 2 hourly has nebulisers.... so as you can tell from that I'm pretty much awake 24 hours a day.

This is why I've not been online much. She's only been having an hour bap a day too.

But extra good news on top of that tiredness is that we're finally after 7 and half months moving back to a hospital Near home with a Jessica 😲 I'm so nervous but also can't wait xx

 

[sethsmummy]

yeehooooo! Thats fantastic! what a clever little girl you have and getting to move back closer to home Im sorry to hear she has a chest infection and your getting no sleep but hopefully that clears soon

 

[Mrs G]

Hey, how's things?
Did you manage to move closer to home?
Xx

 

[sethsmummy]

I hope your ok Hun xxx

 

[Abii]

Glad you guys get to move closer to home

 

[Bumblebee2408]

Hi Ladies,

So sorry I've been away so much a month ago we managed to move to a hospital nearer home. Since then we've had a care package go to panel and our local council are paying for us to have 4 nights a week care which will help us greatly.

However carers need there own room to care for her in which we simply don't have.... We've applied for help through our local council in housing as we're in desperate need and they're making social services come out to assess where we live before they'll even put us on the list. That could take weeks to sort 😣 feel like we're being kept on for the smallest thing now. I know it's right of the hospital to keep her but we wish someone had told us this could have been the case months ago so we could've had all the assessments done in advance.

I feel so sad my baby is 9 months old and never been home xx

 

[sethsmummy]

Oh Hun I'm so glad that your closer to home but so sorry your hitting more hurdles
How is she doing with everything? I really hope she's still going well with the trach ❤️❤️

 

[Bumblebee2408]

She's had no blue does since her Trachey was in which is good. Although she gets lots of chest infections and goes back on to oxygen on occassion. (She's currently on it again at the moment).

But we're still back for dilatations every 2 weeks in Bristol. So a lot going on. Just wish we could get her home 9 months in hospital is far to long xx

 

[Bumblebee2408]

Oooh also she is being fed via a pump into her stomach over an hour and half as shes sick otherwise and to top that off shes fed 3 hourly like a newborn so that's tiring work. She also needs suctioning whenever she has too many secretions stuck in her trachey (which for want of a better description is like vacuuming her airway out). She has daily dressings and take change of her Trachey as well as weekly ones when we change her Tracheostomy tube as well which is still scary every time but we're getting there xxx

 

[sethsmummy]

It's a lot for you all to take in. I remember when Rohan was in the PICU thre was a little boy with a trach in at the same time and how often he needed suctioned. I had thought Rohan needed a lot but this poor little poppet was bein done every 20-30 minutes bless him. That's a shame she's struggling with chest infections? Is the quie common with a trach?

I'm glad she's tolerating the tube feeds Hun. 9 months in is a very very long time but hopefully you will be home soon. I made a friend while in the PICU and their little ones have a rare genetic condition and they'd both started in hospital from
Birth. The little boy got home bye the little girl has to stay and eventually she ended up on a trach bu they did finally get home after that. It was just after her first birthday. I hope that gives you some hope.. I follow them in Facebook now as they have a page for their children an fundraising xx

 

[Bumblebee2408]

Aww sethsmummy

Thank you that does help yes jess at least needs suctioning every 30 minutes some times a lot more and yes Trachey babies are more prone to infectionsee etc as the Trachey is a direct access to her Lungs 😣 poor baby

Hoping she'll be home by the time she's 1 xx

 

[sethsmummy]

I will keep everything crossed for you!

Are you managing to get more time with your little man now your closer to home? Xxx