It’s December and I am cautiously getting in the Christmas mood. We have had a good autumn, with just one emergency admission and managing little lady and winter bugs at home. But I do not want to get too excited, as I know that any little blip can land us at hospital over the holidays. Particularly after what happened last year.
This is Freya’s second Christmas. Last year we had just come home from Great Ormond Street and lasted until Christmas Day evening when we had to call an ambulance as Freya was struggling to keep her oxygen saturations up. A minor cold turned into a difficult 40 or so hours at Whittington, and the scariest time of our lives when Freya fought for her life in intensive care for weeks afterwards. And what Whittington showed me was how the care of a medically complex child can go so SO wrong if you don’t properly listen to the experts. That is, you must listen to the mama and daddy bear.
So back to the story – Christmas day we landed at the A&E. We got seen quickly, it looked like we’d have stay in for a day or two, plans were being made and discussed. All fairly straightforward and efficient I thought, congratulating myself for having chosen Whittington as our new local hospital.
Then everything just went down the hill. They could not find a ventilator. In the meantime they did not think that my pleas to get Freya on some humified o2 was relevant, so they just ignored me. They could not find the right mask for nebulisers, so they just gave up looking. They cannulated Freya and stopped feeds, but did not bother to give her fluids for several hours. I begged and pleaded, but no one listened. I cried, for hours, holding my baby who was deteriorating fast. But nothing useful was actually happening.
What were the nurses and doctors doing? They were not ignoring Freya, but they were just deadset on plan A, locating a vent. They called up the wards, they called up other hospitals. They worked hard, but stupidly neglecting all other options of making Freya’s condition at least more stable.
And once they found a vent the same attitude continued. When I told the best way to battle secretions was to keep them lose and suction a lot the consultant told me he thought I was exaggerating and Freya would be better off not being suctioned too much so that she could benefit from the support from the ventilator. The night nurse promised me she should suction as often as required but in the early hours Freya’s tracheostomy tube completely blocked because they did not suction her enough. A dangerous, life threatening event.
In the morning, after a few hours of exhausted sleep, I came to I found my baby crying, pale, not able to focus her eyes on anything. When I told the nurse that I knew Freya was was desaturating she told me it was a bad trace on monitor; she refused to increase the oxygen so I did; she refused to call the doctor so I shouted at her until she did; by which time a crash call had to be placed. In the end the numpties at Whittington agreed the situation was too grave for them and we got retrieved to St Mary’s PICU.
What happened over the next weeks will never leave me. Freya was ill, iller than ever before. She was completely sedated, paralysed and fully ventilated for days and days. We could not touch her as any little movement made het oxygen levels drop and her little heart to start giving up. She swoll up from all the fluids.The doctors shuffled around quietly,trying every trick in the book, telling us with grave expressions on their faces that they were running out of options. Freya’s pallatiave care consultant came from a different hospital, just in case this was to be the end.
We sat for days by her bedside, not knowing what to do. I just did colouring in and expressed breastmilk. When you have a sick baby it feels like the umbilical cord is never properly cut. But rather than your child being yanked by an imaginary cord back to you, it is you who gets yanked back to your child. Leaving them even in the best hands fills you with dread. Going downstairs for coffee seemed far. Lunch time outings had to be quick and within minutes from the hospital. You can’t stay 24 hours a day, but leaving is hard – only exhaustion helped me to get some sleep at a nearby hotel.
Days turned into weeks and things were not getting better. I just felt scared and tired and numb. And then something happened, there was a small improvement (parents of medical kids – it was the oscillator. I heart the oscillator).Freya started doing better. They started weaning her off all the drugs and she started coming around, slowly, like a very, very angry little drunkard. She had been on intervenious morphine for weeks, and now at the age of 7 months had to go through weeks of painful withdrawal.
So what could have been done different, better? I still believe that Whittington dropped the ball. With an early intervention, Freya may have bounced back quicker, perhaps even without PICU admission. Or she may have not. But the things I proposed would have not made her worse off, that is for sure. I would have not spend Christmas night bawling my eyes out. We would have not felt as a family ignored, our views discounted.
Cerebrocostomandibular syndrome is rare, and Freya tends to make her own rules. So I, as mama bear of a medically complex warrior, have made it my job to read, learn, research, question everything that comes my way when it comes to Freya and her medical condition. I know countless women and men who have made their mission to become the experts in their children.
So medical professionals and those involved in our children’s care – I urge you: Listen to us, we know these little people the best! We know the normal kiddo stuff like how to calm them down, what is their favourite toy. But we know what has worked in the past, what vent settings have helped, what medications brought results. We know what respiratory rate is normal and we definately know how many times we need to suction their tracheostomy in a day. We may not be doctors, and I am not suggesting we should be in charge of what happens in a hospital, but we are a resource like no other when you meet a medically complex child.
And mums and dads new to it all – listen, learn, ask questions. Research, read, seek knowledge. Articulate and advocate. Share your experiences, brainstorm! Grow from set backs, emergencies. And follow your gut instinct. And if you do not yet feel like an expert, you soon will.
P.s. This week I was saddened to see that someone had stolen the Christmas presents intended for kids at St Mary’s PICU, the very place that nursed Freya better after last Christmas. I was going to include a link to their fundraising page for new toys but it seems they have well exceeded their target. However, all money they collect goes to supporting children and families who need their services and I wholly support them. Here is a link to their website www.cosmiccharity.com. Stealing from sick children is pretty much as low as you can go. I hope people’s charity following this incident will help COSMIC in their fundraising efforts. Silver linings and all that.