Anyone else with a TOF baby??

[Mrs G]

Happy Mother's Day xxx

 

[Bumblebee2408]

Awww thanks MrsG you as well 😁

I went home to see my son in the day and we played in the play centre for hours and came back to a very sleepy Jessica this evening.

Her and the nurses had even made me a card and a photo. I cried bless them xxx

 

[LaughOutLoud]

They postpone surgery due to staff holiday? Which hospital are you at? Sorry it's still dragging but hope everyone had a nice Mothering Sunday x

 

[Mrs G]

They postpone surgery due to staff holiday? Which hospital are you at? Sorry it's still dragging but hope everyone had a nice Mothering Sunday x

I agree, it's awful! There should always be a paediatric surgeon on call to cover. Hope you're having an ok week xxx

 

[Bumblebee2408]

They do have someone on cover but this surgery her own surgeon wanted to do however...... development and a half....... her surgeon only had Friday to Tuesday off..... and last minute she could get the team together on Thursday that she needed to do Jessica's Aeortopexy...... which she jumped on soooo........ Jessica had the surgery on Thursday (10.03.15) Hurrah!

Scary op she was in surgery for 4 hours but came out well. She is still on a low dose of morphine and is on high flow after coming off her ventilator yesterday. (It was touch and go if she'd end up back on it but she's managed to stay on just high flow).

Although as she was moved to PICU she's managed to pick up the rsv virus (similar to bronchilitus). However so far she's not been to bad with it.

Hopefully moving to the ward tomorrow and then it'll be onwards and upwards from here. Only time will tell I guess xxxx

 

[Mrs G]

I'm so glad she's had the surgery! What exactly did they do? Rsv is nasty, Tommy tested positive for it when he had bronchiolitis. Hope she's on the mend.
Xx

 

[Bumblebee2408]

The wrapped part of her aeorta around her sternum (bone in her chest) to pull open her airway.

Unfortunately...... after a week of it looking good and almost thibking about going home..... yesterday evening she went blue and had to be bagged around 😦 so it's back to the drawing board I guess.

Feel so downhearted today xxx

 

[sethsmummy]

im so sorry hun so glad to see that she has had her surgery and it went well. so sorry to read shes managed to catch rsv, that could be the cause of the recent episode hun. my little one was very poorly when he had rsv/bronch and PICU/HDU was full of other babies with it when we were in. xxx

 

[Bumblebee2408]

Well it Deffo looks like the op has failed. She had a major melt down on Thursday. It was so bad she's had a partial lung collapse on both her Lungs.... she's aspirated which she's still having physio to help with that and she's been on a ventilator since as well.

It has been a horrific week xx

 

[sethsmummy]

oh hun im so so sorry

 

[Mrs G]

Oh my goodness I've only just seen your news, I'm so sorry. Any updates? Thinking of you and your girl xxx

 

[Bumblebee2408]

Hi Ladies,

Thank you very much.... she definitely went downhill poor baby is still ventilated 2 weeks later and she's having twice daily chest physio.... Although it is finally looking clear on x-ray's and for the first time since her meltdown she's been smiling and wiggling today even with a ventilator tube up her nose.

Anyway moving forward the hospital have realised her issues lie down closer to her bronchial tubes near her Lungs hence why they believe her aeortopexy didn't work. So they now want to do a bronchogram tomorrow.......

During a bronchogram a camera contained in a flexible tube (bronchoscope) is inserted into the airway to look closely at the airway wall. This allows drs to see if the lining of the airway is inflamed or compressed.

Secondly, a tiny amount of contrast – a substance that shows up well on X-rays – is put into the airway and X-rays are taken from various angles to give accurate measurements of the size of the airway and where the problems seem to stem..... from there they'll decide if we trial a cpap mask and wean her off it slowly as her airway gets better..... or if they need to do a Tracheostomy (which they think may need to be ventilated) this is quite a scary thought... she'd need 24hrs care but I know we'll cope the best we can xx

 

[sethsmummy]

oh hun im so sorry shes still ventilated! I really hope the bronchogram goes well and they can find the route of the problem. I will have everything crossed that you can go down the cpap route instead of a trach.

 

[Bumblebee2408]

The bronchogram showed very little as she was very relaxed during the procedure..... so frustrating.... so they still want to trial CPAP (which if I'm being honest I don't think will work).

Just a stressy situation xx

 

[sethsmummy]

oh hun i wish there was something i could say that would help take away some worry or stress but i know there is nothing i can do but offer virtual love and hugs.

I really hope she surprises you and the Cpap works

 

[Bumblebee2408]

Thank you sethsmummy. She's also poorly now had a temp of 39 degrees, vomiting. She got in a right little state today as she didn't know what to do with herself. Bless her.

We have her MDT meeting with all the teams involved in her care tomorrow to discuss her plan from here xx

 

[Bumblebee2408]

Just to update we've had our MDT meeting and it's been decided a cpap mask would not work for our little girl as she would have to be weaned down to only using it at night and nap times before she'd be allowed home and since her non breathing episodes happen while stressed and upset (and whilst awake I might add) it has been decidedited she'll need a Tracheostomy. Unsure if the Trachey alone will work or if she'll need ventillation support..... only time will tell.... if it's just the Trachey we could be in hospital just over a month at most and be allowed home. If ventilated she'd need to stay another 6 months while we train on Trachey and ventillation support etc and a care plan is put in place for her.

Sad days as it does feel like a smack in the face when she's done so well in the past on minimal ventillation and non at all sometimes. But it's good as it's also moving towards home eventually either way it ends up going.

Thank you for your ongoing support ladies.

Ps...... Anone who may read this with a TOF/OA baby (now or in the future) not all tof's are like this apparently our case is quite rare usually they have their repair and get to go home within a few weeks.... the reason we've been in so long is because she's has severe tracheomalacia which is affecting her airway.
Xxx

 

[Bumblebee2408]

Jessica went today for her Tracheostomy, Gastrostomy and a dilatation. She has come out really well. The only slight hitch she had an allergic reaction to morphine so got a rash and went a little puffy.

However they changed her morphine to something else and all seems good from there.

Xx

 

[sethsmummy]

oh hun im so sorry its come to this

hopefully with the trachy it will just be a case of its there so you can give her the support when she needs it and she does the rest by herself when support isnt needed. She is such an amazing little girl hun she really is.

is she feeling better now hun? I hope the swelling has gone down from her reaction.. thats quite a common one to react to the high meds. my little boy cant have Fentanyl as it plummets his BP and takes days to bring back up. I pray that she doesnt need to be ventilated though hun so that you get to take her home sooner.

 

[Bumblebee2408]

Fentanyl is what she's on now instead of morphine bless her. She's a lot better from her reaction. She's still a bit stressed out with everything but we're slowly weaning sedation and seeing how she gets on xx