I just wanted to write a small section about our experience at 6 months old that resulted in a stay in Paediatric Intensive Care. It was a cruel blow at a time when things were improving. We had just been weaned off home oxygen and I was mentally coming to terms with things, preparing to return to work and generally the outlook day to day was rosier. I even had begun to nail that elusive “routine” so much beloved in baby books. The pneumonia contracted set her health back to square one and I had to see her fight for her life again and much harder. Although she made a full recovery, her reserves and immunity are notably lowered, her developmental progress has slowed and my ‘baby blues’ were replaced with a near-crippling spate of depression and anxiety that haunted me over the following months.
It started off with a cough that wouldn’t shift. After a week I went to the GP. Seeing the words “premature”, “home oxygen” and “CLD” she panicked and sent me up to the paediatric team at the hospital. We went in for observation, saw two consultants who airily gave me a leaflet on bronchiolitis, got given an expired sandwich and free cup of tea, were open access and sent home.
I put Wriggles to bed who was now much less wriggly. She was more settled and I shortly followed too, exhausted by the day. I couldn’t settle at all. Maybe it was being back in hospital, maybe I had become one of those over anxious mums but I felt on high alert. I must have drifted into light sleep but at just after midnight woke up to hear Wriggles struggling to draw breath. On auto pilot I found some milk, a bottle, clean pants and bundled her into the car seat. The paediatric EAU confirmed to come in straight away via A&E. It felt surreal-not helped by the fact the taxi driver was called Maxwell Onions, who reversed the wrong way down a major slip road near the A1 and had a penchant for turning right when the satnav said left. Oh and happily chatted away that her breathing sounded terrible. I know, I thought. That is why we are going to hospital!
It started off with a cough that wouldn’t shift. After a week I went to the GP. Seeing the words “premature”, “home oxygen” and “CLD” she panicked and sent me up to the paediatric team at the hospital. We went in for observation, saw two consultants who airily gave me a leaflet on bronchiolitis, got given an expired sandwich and free cup of tea, were open access and sent home.
I put Wriggles to bed who was now much less wriggly. She was more settled and I shortly followed too, exhausted by the day. I couldn’t settle at all. Maybe it was being back in hospital, maybe I had become one of those over anxious mums but I felt on high alert. I must have drifted into light sleep but at just after midnight woke up to hear Wriggles struggling to draw breath. On auto pilot I found some milk, a bottle, clean pants and bundled her into the car seat. The paediatric EAU confirmed to come in straight away via A&E. It felt surreal-not helped by the fact the taxi driver was called Maxwell Onions, who reversed the wrong way down a major slip road near the A1 and had a penchant for turning right when the satnav said left. Oh and happily chatted away that her breathing sounded terrible. I know, I thought. That is why we are going to hospital!
Sod’s Law was working in A&E. Wriggles’ state sent me and two nurses into panic. By the time we found a registrar, being upright for hours and saline drops had taken the edge off the donkey-like breathing. Nevertheless we were admitted as she ticked every box for complications being likely.
By morning she was struggling again, was vomiting with small flecks of blood and was refusing feeds. A wonderfully brisk nurse popped a nasogastric tube down, started nasal oxygen, referred us to the respiratory ward and fitted a cannula incase we needed to start IV fluids. Over the next 48 hours she began to show some signs of improvement in colour and feeding although her oxygen requirement was creeping up rapidly from 1L on admission to now 14L. She begun refusing feeds and was looking pale and knackered. IV fluids were started and her daily blood gases were increased to every few hours to acertain that her body was coping with gaseous exchanges. I was told we might need to go to upstairs to High Dependancy as there was a higher patient:nurse ratio and she needed keeping an eye on. Overnight she declined again. She was on the maximum dosage of oxygen the ward had capacity to administer, her blood gases were getting worse and her breathing was becoming very shallow and laboured.
We wound up in Intensive Care in an isolation unit from a hunch by the doctor completing the transfer. A correct one; within minutes she experienced a massive de-saturation and the decision was made to intubate. For 48 hours, they said. Just to give her some respite. Nothing that serious at all.
We wound up in Intensive Care in an isolation unit from a hunch by the doctor completing the transfer. A correct one; within minutes she experienced a massive de-saturation and the decision was made to intubate. For 48 hours, they said. Just to give her some respite. Nothing that serious at all.
Seeing her sedated and on the ventilator was hell; but I clung to the hope it was very short term. The x-ray confirmed one lung had collapsed and the other wasn’t looking great. A bit of inflation and I’d have my baby back. The next 48 hours went as expected and extubation was commenced with everyone confident that we would be out althogether by the end of the weekend. She was put on humicare, a device similar to CPAP, to make the transition easier. Within 20 minutes she collapsed in my arms and needed resuscitating before re-intubating. Her airways were so swollen they struggled and a new x-ray showed the infection had grown and spread rather than dimished from the antibiotics. Pneumonia, they said shiftily. maybe not so straightforward after all. Twelve hours later she suffered a cardiac arrest and needed resuscitation again. The next 36 hours were critical; her BP was extremely low and took at least 3 drug infusions to keep it at a level that didn’t inspire utter panic. (Added to the 8 other drugs through a long line that were at this stage keeping her essentially alive) Sepsis had set in and the prognosis had dropped to taking each hour as it comes. I was told it was a good time for family to come up “in case”.
A long week after this latest prognosis she began to show signs of fighting. A further week later they were happy to start weaning the ventilator pressures down and reducing morphine, sedation and paralysis levels. Seventeen days after transfer she was successfully extubated and amazed the doctors by whizzing through CPAP, humicare and nasal cannulas and being able to breathe air in just 8 hours.
Two days later we were mercifully home.
Two days later we were mercifully home.
I will be eternally grateful to the staff on PICU and ward sister who decided that a general paediatric ward was not the place for her. The experience felt worse than NICU as the bond has formed ‘proper’. I had been by her side all day every day for 6momths. I knew her personality; I was the expert on her. And there was my baby critically ill. 6 months on not a day goes by when I don’t think how lucky I was.
