Anyone else with a TOF baby??

[sethsmummy]

I'm not surprised she's a bit stressed bless her. She gets used to one thing and everything seems to flip on her. I hope everything settles down as her body slowly adjusts to the trachy.

How are you doing mumma and how is your other little one doing? Xx

 

[Bumblebee2408]

Jess is doing really well she seems much happier since the weekend has ended. Things are finally settling down and causing her less pain now which is good. Still unsure if she'll be able to come off her ventilation through her Tracheostomy or if she'll need it more long term only time will tell.

Jack is well I sobbed leaving him the other day though it's all getting very hard for me now. Leaving him long term is the hardest thing I've ever had to do.... no parent should have to leave there children.

 

[sethsmummy]

I'm so sorry Hun. Are you far from him Hun?

So glad to hear that Jess is doing much better xxx

 

[Mrs G]

Hi
You guys are really going through it. I hope you're doing ok. What's the update on little lady?

Your comment about people reading this and Jessica being an extreme tof was so self less. Yes there are loads of degrees of tof/oa. Tommy had to have 5 dilatations in 6 weeks and had some scary blueys. I know of some babies who have their construction then never need further treatment. Your little lamb has really had a rough deal and yet you're worried about scaring people with her story. Amazing to be thinking of others at a time like this. Massive hugs to you mama. Xxx

 

[Bumblebee2408]

Sethsmummy: We're about an hour and a half's drive from him. But as he's so little it wouldn't be fair to have him here with us. He's very outdoorsy and hates being stuck inside. However we've said if she has a ventillated Trachey in the end then we know she'll be here at least another 6 months. So then we'd obviously bring him. Hoping she won't need it xx

MrsG: Thank you for youreplying kind words. I don't think it's selfless many manyears tof's are straight forward and I've not seen many links on here I don't want people to assume it means having a TOF baby will mean they live in hospital 24/7 it's been the case for us but we're told lots by the hospital that she is quite a rarity (even though there is another baby whose 20 days younger whose in a similar situation. However our 2 girls are the only tof's here and have been since they got here )

Update: Since being really stressed at the end of last week and over the weekend Jessica has done so well. she is much happier and calmer with her Trachey and they've been able to wean some of her sedation and medications down. She's actually had a few smiles today. However we've been told they won't fit a speaking valve for her Trachey until she's older. So we're now in the process of learning basic signing to help her communicate as she grows. It's sad we might not here her laugh or speak until she's older but if it's what she needs to keep going then we're just happy to keep encouraging her.

 

[Abii]

I'm so glad to hear that awesome update hun, I've been thinking about you guys alot and I'm glad she's doing better

 

[Bumblebee2408]

Thanks Abii.

Today Jessica got to come off her ventilator for a break for 1hr 😄 she did really well. I was sooo proud of her. She managed quite well so we'll see how she gets on I guess over the next week or so xx

 

[Abii]

Thanks Abii.

Today Jessica got to come off her ventilator for a break for 1hr 😄 she did really well. I was sooo proud of her. She managed quite well so we'll see how she gets on I guess over the next week or so xx

Aw that's amazing to hear! you have a littler trooper for sure

 

[Bumblebee2408]

We do I'm so proud of my babies jack has been such a big boy while spending loads of time with nanan and grandad while we've been back and forth from the hospital.

Jess has just been such a fighter it's unreal.... everything she does is with a smile and today after a month of not being able to hold her (as she was ventilated through a tube in her nose before the Trachey and was healing for the week after surgery) while she had her ventilation free time we had cuddles and lots of smiles 😃

Happy Momma I just hope she keeps it up and doesn't need the ventilation long term xx

 

[sethsmummy]

oh hun im so so happy to come back on and read these amazing updates sorry ive been mia, weve had another night in hospital and him being poorly.

That is fantastic that you will be able to take him in hun but i know what you mean with it being unfair to take him in. When we were in PICU with Rohan his brothers only came once because there just isnt the space in there and i felt it might be a bit much for them.

I am so so happy that you got to have some proper cuddles And i cant believe she did so well off the ventilation. I really hope they can keep giving her ventilation free time and you get to hold her more and more.

 

[Bumblebee2408]

Well yesterday was fun.....

Jessica decided behaving wasn't much fun and very quickly developed a septic shock attack as one of her lines got infected her heart rate immediately jumped up high, then she dropped her o2 rates..... she was screaming constantly for hours and vomiting. Spiked a high temp. She finally settled with the help of two doses of medazalam... fluids.... paracetamol..... loads of mummy cuddles and whatever else they could do to help.

Anyway she had 6hrs off the ventilator today with no issue. Hurrah 😄 xx
Xxxxx

 

[sethsmummy]

oh lord Miss Jessica needs a break poor girl! I am so glad they got it under control hun. Thats sounds absolutely horrible. Thats Amazing she has more vent free time today long may this continue hun.. have they set a plan out as to how often she can come off or is it just a case of see how she is doing at the time? xx

 

[Bumblebee2408]

At the moment it's just try her longer each day then off the ventilator completely and see what she does 😄

Today she had 10 hours... Tomorrow they plan 12 hours then over the weekend off completely..... Hopefully from there we can leave ICU and move to HDU.

But baby steps I still don't trust that she won't go blue once they take her off completely..... this is Jessica xxxx

 

[Bumblebee2408]

Ps my baby was 7 months old today!! It's a good thing but at the same time feel I'm being robbed of my baby stuck in hospital all this time 😣 xx

 

[sethsmummy]

omg thats amazing! i really hope the weekend goes without a hitch! she may not have to work as hard now with having the trach in which may help! I will have absolutely everything crossed over the weekend thinking of you both

Happy 7 months old Jessica I can understand that hun. Its not the same but i have the same emotions regarding Rohans newborn days so i can kind of understand it. Is there anybody at the hospital you can talk to regarding the way you feel hun? I really hope you get to take her home soon

 

[Abii]

Aw happy 7 month birthday Jessica how did her being off the vent go?

 

[sethsmummy]

I hope everything is going well hun! xx

 

[Bumblebee2408]

So far so good she's been happy and smiley there's even talk of her finally been able to use her stupidly expensive buggy!! Lol

 

[sethsmummy]

ahhh i am so so happy to read that hun! it sounds like she has turned a corner and i hope and pray that she stays on this path hun and continuous to improve! xx

 

[Bumblebee2408]

Today was the most amazing day ever our nurse was like "you've got your buggy great 😄😄 let's go out for the day while you're little boys here"

We went out to pizza express for lunch with the kids and my in laws 😄😄 jess loved it and it was sooooo nice to do normal things with my babies