emily's LTR

[saywhatyouwill]

the first stage went exactly as planned. her doctors are very pleased with it all. there is so much i could say but will try to keep this short!

mainly, i feel like an idiot for being so unprepared for how hard it would be on her. she spent all night crying even when she was asleep. i couldn't believe they started her on paracetamol and brufen only!! she's now getting dihydrocodeine as well. phew.

she has done well in lots of ways: they expected that she would be ventilated for at least several hours post op and maybe up to a week but she was off before she was out of recovery. she came off oxygen completely after 24 or so hours. she had her first tube change today and that went well too. and we are back on the ward and not in HDU which is very nice.

the 2 things they didn't tell us are among the worst!: she can't vocalise at all as her stent has been stitched over to stop any airflow, and she has to be NG fed for 7 days. she's being VERY good at trying not to pull at the tube. mummy, however, managed to yank it out by mistake today.

so...it's been agreed that whatever her airway looks like at the scope next week (and stent removal) we will come home for a bit with the trach just to get a break and head back in sometime later in the summer for decan.

:-D

very proud of her.

[drct1245]

It seems like no matter how hard you try and prepare... there is always something they don't tell you. I hope she is on the mend and not in much pain very soon... :hug:

[JWorthington]

she is such a brave little girl. give her a huge hug from Sam xxx

[TommysDad]

I'm glad to hear that it has gone very well. I have heard that some kids, even after having the stent removed, have decreased volume in voice due to swelling or some scarring. However, the parents were told it will get better with time, and it did. We'll be praying for excellent results when the stent is removed.

And don't feel bad about removing your daughter's NG tube. I can't tell you how many times we accidently did it or a nurse did it. It just happens some times. Your 7 days will be up before you know it, and you won't have to worry about it again.

Thanks so much for taking the time to update us. We all know how stressful recovery can be at times which makes us appreciate the update even more! Please continue to keep us posted as you have the time.

~Maggie

[TommysMommy]

Thanks for the update! I guess it didn't occur to me that the stents would prevent vocalizing. Tommy wasn't ever able to vocalize until his stents came out. Hope the week goes by quickly for you.

[Ainsley's Mom]

I'm so glad to hear things went well. Don't you love those unexpected surprises?! I hope you're out of there soon. I can't wait to see Emily without her trach later this summer. :D

[Kaylie]

:hug: what a remarkable little one you have . i am so thankful that things have gone good, i feel bad that she was in so much pain, but i hope they have that controlled now... keeping fingers crossed for all good things ahead..

[kirafaesmom]

I'm glad she's doing so well! That would be hard to deal with not being told about her vocalizations...I'm sorry. I hope you are out of there quickly.

[saywhatyouwill]

day 4 and she is getting better but it seems slow. her doctor is surprised at how out of it she still seems. i am surprised because i expected her to bounce back more quickly. i am naive i suppose because i was thinking back to her heart surgery when she was a 6 month old and where she woke up through the morphine and was dancing around with a smile on her face. it was so different then though - she started out as a very sick baby and was "fixed" whereas this time she was a very healthy 2 year old subjected to a big op.

anyway...she is doing well and the next stage is approaching quickly.

all i need do now is keep my gob shut a bit and try not to fight with any more nurses.

[KJKK8437]

all i need do now is keep my gob shut a bit and try not to fight with any more nurses.

That was always my problem. :eek:

[saywhatyouwill]

That was always my problem. :eek:

i don't get them sometimes. it's like if you ask a question they think you are undermining them or something. i was so glad to see our dr today cos you can actually have a normal conversation with him. he actually has brain cells!

the one nurse who i have had run ins with i think i will complain about. she has a very unhelpful attitude. she doesn't seem to understand that the stresses of her job are not my problem.

[Wooders80]

Glad to hear everything is going well. Hope the next few nurses you have are better too.

[lynn]

Glad to hear you got to talk to the doctor, but sorry the nurses are so unhelpful. Hope you can get home soon and get rid of the unneeded frustrations of dealing with hospital staff.

[haltec]

Thanks for the update Clare. I'm so glad that Emily is doing well. I hope she is her smiling self soon.
Good luck with the nurses. :)

[Jae's Mom]

Glad to hear the good news about the surgery. Hope she has a speedy recovery.

[alizesmom]

Good to hear Emily is progressing and you haven't killed any of the hospital staff. Praying you get home soon. :hug: Karen