Hey you lovely lot. I’m honestly at breaking point and I really don’t know how much longer I can carry on fighting when no one is listening except hv who although is brilliant (had the same hv since my first baby who is now 5 and I have 5 kids and of course I’m not ever going to give up fighting to get him the help he needs but my god I’m so exhausted) my mental health and my own health is falling apart and it’s starting to take its toll so I’m sorry for long post but
my twins are currently 8 months old( 5 months corrected- 30 weekers) and my boy twin has had 3 different respiratory infections since the 2nd September. (Countless infections before this but never this many within a mont period)
He was diagnosed with a lung infection on the 2nd of septemeber which they treated with co-amixclav. Following that like a week after the antibiotics was finished he caught bronchiolitis. He didn’t even fully recover from that and is now suffering with severe croup!!
Since may this year he’s been struggling with his breathing and with signs of aspiration.
symptoms like:
consistent tracheal tug that never goes away
Nostril flaring
stridor
wheezing that comes and goes.
symptoms relating to potential aspiration:
coughing during, after and inbetween bottles/ food.
eyes glaze over(tear up) during feeds
reddening in the face during feeds
chronic cough that he’s had since may and worsens when poorly.
multiple infections since he left nicu.
excessive drooling
wet cry (this could be 2 hours after a bottle or straight after and it’s consistent.
he doesn’t have CLD (chronic lung disease) despite spending 33 days out of his 56 day nicu journey on oxygen.
supposedly not aspirating but they’ve not actually done anything to check other than a barium swallow which is for reflux which came back negative for so it’s not that, however consultant won’t refer to speech and language for a swallow assessment. I went over his head and cried down the phone to the neonatal outreach team who are thankfully helping us get him seen and some help.
I just can’t continue to see him so poorly when his twin sister is an absolute fighter and doesn’t even get phased by a cold now. She has no symptoms like this and is in perfect health, hitting milestones quicker than what she would, growing well, whereas my boy is not doing anything except talking away at me and smiling/laughing when he’s well enough to do so.
i don’t know the point of this post really other than advice I suppose…