"Care of newborn son with meningitis"

Last year my son was born 4 weeks early, although early he was very healthy with no issues and healthy weight. We were discharged 2 days after.

At two weeks old my son contracted a viral infection from my daughter and fell very ill very quickly. We rushed him to Aberdeen's childrens A&E and were seen immediately and it became obvious he was very poorly and was being treated at sepsis level.

We were shipped straight up to HDU where he was put on optiflow, because he was so unwell they could not get a cannula or NG tube in successfully without him turning blue and needing emergency oxygen so this was extremely upsetting as we didn't know how he would be without fluids/milk.

Me and my partner stayed within the hospital and I slept by his side every day/night during the stay. The nurses were fantastic, they were a great support when things became unbearable. There was a nurse who was the first to care for my son during his first night so they saw him from admission.

I said to this nurse I was so relieved when my son was put on the optiflow as it seemed to stop him grunting and he was a little calmer. Overnight his temp spiked so he was given paracetamol, this helped a lot but I found out the next day from the consultant that they had overdosed him with this accidentally and they would need to run bloods to see if it would have any detrimental effect. He needed a lumbar puncture which they attempted to do as well but unfortunately failed.

Day 2 they then decided to take him off the optiflow to see how he would get on and I made it very clear I was not happy with this because it felt way too soon, I was worried he would go back to how he was but I felt I should listen to the advice and see how he goes without it.

Fast forward into the evening, the nurse came onto shift and I said my son started grunting again and seemed to go downhill with his saturation levels dropping again and I felt the machine was always alarming. The nurse listened and said they would keep an eye on him then review with doctor. Another few hours passed and still no doctor to review, but the nurse was in hourly to do obs and was changing his nappy every hour, which I found extremely bizarre because this was waking both myself & my son up and seemed to make him worse, I didn't think it was appropriate of course unless he had a dirty nappy it would need changed but certainly not every hour!

I then managed to fall asleep for 2 hours max and woke up to what felt like my worst nightmare, my son had deteriorated even more so, being very limp, white as a ghost  and grunting so much worse, he looked horrendous, almost as if on death's door. I scooped him up immediately and clutched him to my chest whilst I buzzed for someone to come, The nurse came in and I was so upset and angry and asked to see a doctor immediately.

The nurse said the doctor was in when I was sleeping and said that premature babies often grunt and it's normal...this is the moment I completely lost it because the nurse had cared for my son from the first night and saw the improvement there had been when he was on the optiflow and I had stated multiple times throughout the night I wanted him back on the breathing support as I felt he went completely downhill.

I demanded to see a doctor because I felt my son was gravely ill and maybe not going to make it. The nurse then eventually got the same consultant up who I explained everything to in detail from admission to now and they agreed he was not in a good way and he needed to go straight back on to the optiflow and needed an emergency lumbar puncture there & then alongside another cannula.

Because my son had deteriorated so much during the lumbar puncture, he stopped breathing and needed emergency oxygen to get him back, his little body was giving up so much so easily he was so fragile and that was the day we were told they were not sure what would happen now and to spend every minute with him.

I have honestly never been so distraught in my life, I was like a shell of myself, desperate for my son to be okay and so angry at the negligence that happened the night before leading to this. 

This has became too long winded but I just want to make sure nothing like this happens to any other family because if I was listened to we wouldn't have had to go through any of that. I genuinely feel it has left me with such an unhealthy fear of losing my son to any sort of future illness no matter how minor.