Hi all, I am hoping that some other families may have been through the same, some hand holding needed please or any professional views. A first time poster.
Our gorgeous girl was admitted to PICU from the emergency department 13 days ago, we were told she had RSV and rhinovirus. She was intubated, transferred to a specialist hospital and started to make a good recovery after extubation occurred 7 days later. Feeding was going well, we both had a diarrhea bug which set us back a day but that was okay. We were doing a mixture of breastfeeding directly (as we’d done for the first 10 days of her life at home) and feeds through the tube from me expressing. We got down to 0.05 of oxygen on low flow and all of a sudden after being transferred back to the local hospital for feeding support and working towards home, her heart rate was increasing rapidly, work of breathing declined and we’re back on the ventilator once more, we just can’t believe it. Still positive for RSV but no other marker results back yet.
Perhaps a secondary infection? Our local hospital didn’t have CPAP just high flow oxygen so a re-ventilation could have been avoided who knows. We’ll never know. The second decline was fast again with marbly skin appearing - not nearly as extensive as the first admission when our baby’s toes / hands were purple but still severe. It’s been suggested that it could be a pneumonia of sorts. The re-ventilation was done in an theatre environment, not treated as such an emergency but still.
Our girl was full term btw, but small, circa 5lb 8 on day 10 (a 37 weeker).
I have very irrational thoughts, i.e that we’re never going to get out of here and what if she just keeps on picking up colds / bugs constantly. She is back on the antibiotics, on the sedatives, it’s so heartbreaking and I feel so sad for her.
Has anyone else been through this? The doctors have said this is rare & unusual but not impossible, she had been off the ventilator for four days and we had been sent back to our local hospital. Not a lot makes sense right now.
Being blue lighted twice, the cannula’s being put in (the second time) was just dreadful and organising childcare for our toddler at home has been hard but we’re muddling through. We won’t be home for Christmas but I just want to know that we will be at home one day! My DH has been brilliant with supporting us all, the travelling back and forth from home hasn’t been easy for him, luckily he is still on leave from work.
Thank you in advance for your help xx