A Mother's Love

- Diary from Monday evening 22 March to Tuesday 23 March

 

20:45 We arrived at the hospital, Sam fitted it was horrendous. It lasted 30 minutes, and I cannot begin to say how frightening it was, I thought I was going to lose him. He is asleep, we are waiting for a doctor, Sam hasn’t talked yet. He was foaming at the mouth and unconscious for 30 mins, the ambulance had to stabilize him before the brought him to hospital. I thought I was going to lose him. I am still so worried, he’s not talked yet.

 

I felt the staff dismissed me as an over-anxious parent, it is my worst nightmare. You hear about this happening, and I can’t believe it is happening to me. I was pleading for antibiotics and explaining we had just been to the Walk in Centre where they gave us penicillin as they though he had tonsillitis. They seem reluctant to give him some, and I don't know why. I know there is something seriously wrong with Sam. He isn’t looking at me, he is not showing any emotion or talking.

 

Note After Sam died, I learned the handover process between Derby Royal and East Midlands Ambulance had gone catastrophically wrong. Derby Royal incorrectly thought that Sam had a one minute febrile convulsion at home, not a 35 minute seizure. In addition, they also had incorrectly rated him on the Glasgow Coma Scale (GCS) assessment as 15 out of 15 i.e. that he was fully conscious. But Sam wasn’t, he wasn’t talking, or displaying any emotion. He should have been rated as 11 out of 15 maximum. This all minimized the severity of how poorly Sam really was. And it is now clear why they were dismissing me as an over-anxious parent, they didn't realise how poorly he was as they had failed to understand Sam's history. These errors resulted in him not receiving escalated treatment and medication.

 

21:00 I received a text from my sister who lives in Blackpool “me and mum are going to leave in five minutes. I don’t think we will be allowed into the hospital but we can wait outside. It’s not a problem driving down tonight, we are packed.”

 

23:30 He is being admitted to HDU as he has had a further three fits. I haven't heard Sam speak yet, he is just sleeping, but in a strange way and snoring. I am beside myself with worry.

 

02:00 Sam was admitted to HDU at Derby hospital around 2am. I was allocated a fold down bed opposite him and encouraged to go to sleep as Sam was "fine". But I knew Sam wasn't fine and there is NO way I could go to sleep whilst I knew my little boy was so critically ill. As the nurse yet again tried to reassure me Sam was fine and go to sleep (again I felt I was being viewed as an overanxious parent) his SATS suddenly plummeted and alarms were going off. He had started having further seizures and was becoming hypoxic. I have never ever felt fear like it in my life. I was watching the clinical team clearly begin to get panicked, and I am in no way being disparaging of them. But it was clear something was catastrophically wrong with Sam; I actually thought he was going to die. The fear was indescribable, I was shaking and could barely breath. It felt the medical team were either unclear of what to do, were panicking at the severity of his symptoms, or that the critical nature of his decline was simply outside of their skillset/clinical expertise.

 

The sister in charge shouted, yes shouted at the doctor, on a number of occasions "you must remain with your patient, do not leave your patient" as he was over at the nurse’s desk and not by my Sam’s bedside. He was leaving the nurses to deal with my son. I can’t believe he would leave my son when he was so critical. To witness such scenes was deplorable, I was utterly distraught, and panic stricken. However, I am thankful to have a nurse who was so courageous and was trying to hold the doctor to account. But it sickens me to think that a doctor could be so lax with my son’s care when he was so ill. 

 

More and more clinical professionals were coming over to Sam’s bedside, but it seemed to take some time. Then the nurse who had looked after Sam from A&E appeared. I ran up to her and she gave me the biggest of hugs. I was so utterly relieved when I saw her. I told her that no-one appeared to know what they were doing and could she please sort it out. The scene was so terrifying to witness. No-one told me what was going on, I was just stood there on my own watching it all unfold. Sam eventually had a full team of clinicians around him and I felt the need to remind them that my whole precious world was lying in that bed in front of them; I needed them to concentrate (i.e. get it together and make him better). The fact that I felt the need to say this says everything… I am so angry about his care at Derby. It was only after Sam died that I found out the full catalogue of mistakes and poor care Sam had received. But I am thankful to the nurses who cared for Sam, they did their best.

 

Note – After Sam died I since found out that the doctor on duty in HDU didn't inform the on call consultant that Sam was being admitted to allow him to have oversight of Sam’s care, and also allow him the opportunity to come in from home. There was also a failure in communication between A&E and HDU as the doctor on duty only thought Sam had a one-minute febrile convulsion at home. He hadn’t been informed of his other seizures in A&E. Yet again, the severity of how poorly Sam was had been minimized, and yet again this caused a delay to him receiving anti-seizure mediation when his seizures returned in HDU. I have since learned that the more seizures someone has, and the longer they go on for, the harder they are too stop. Seizures over five minutes long, or clusters of seizures without returning to baseline consciousness, must be treated as a medical emergency. 

 

05:35 Sam has been intubated, so placed in a coma. He is being transferred to Nottingham QMC Paediatric Critical Care Unit (PCCU). I asked my friend to let school know for me. My mum and sister are at my house, they drove down last night, can't believe they drove down from Blackpool to be with us. They have been to see me at the hospital. The CoMET transfer team are here and preparing Sam for a transfer to Nottingham QMC critical care. I was so relieved when they appeared, I finally felt Sam was in safe hands. They were like real life superheroes walking in. They had to get him stable to travel, his veins are closing.

 

07:30 The consultant at Derby thinks it is definitely an infection from his tonsillitis. His temperature has been changing very quickly which can be a cause of seizures and also pathogens. I just wish I had insisted he had physically seen someone at the weekend when we called 111.

 

11:00 Sam is on route to Nottingham's PCCU at QMC. We walked with him to the waiting ambulance. It was like an out of body experience to see my son connected to all these machines that were keeping him alive. We couldn't go with him, there was not enough room in the ambulance as there was a large team of people travelling with him. Can you imagine not being able to go in an ambulance with your child. But I did feel reassured he was in very good care. Myself and Sam's dad went home and quickly packed a bag and then went direct to QMC. I packed some of Sam’s things like a toothbrush and PJs. I call my friend Max to let her know what has happened. She keeps me calm and tells me everything is going to be OK.

 

13:00 Sam is settled at PCCU at QMC. He has his own room as they are unsure if he is infectious. They are trying to find out why it has happened. They are doing a lumbar puncture to rule out meningitis and PIMS which is related to covid. We saw the consultant and they gave us lots of reassurance. They said there is a huge protocol of anti-seizure medication to give Sam, so try not to worry. Have to say we felt very relieved, it did make us feel a bit better.

 

20:30 Sam is having amazing care, and the nurses and doctors are out of this world. I had a melt down this afternoon couldn’t cope, but feeling a bit stronger now after talking to Becky. He is still in a coma, and they are trying to manage his seizures. He has an MRI scan booked to try and understand his seizures more.

 

22:00 He is having a CFAM connected tonight (CFAM is a piece of equipment which consists of electrodes placed on his head which is connected to a computer in his room to monitor his brain wave activity, we can then see his brain waves on the screen and see when he is having a seizure). He is still having seizures but the team are upping his medication each time he has one.

 

23:30 Sam keeps fitting they can’t seem to control it. They keep trying different meds. He has been fitting for over 40 minutes. I am out of my mind with worry. I am so frightened, I am beside myself, my anxiety is off the scale, I feel sick. What is going on, I just want Sam to get better. I am praying so hard, I am pleading with God to make this all go away. I promise I will be a better person, please just save my son.

 

Thank you for reading and helping us to raise awareness of what a horrific syndrome this is, and importantly why we need more research. 

 

The next update will be tomorrow.

 

But for now I will leave you with this beautiful thought...

 

WHAT IF...

Everyone in HEAVEN knows our NAME

BECAUSE

They TALK about how MUCH they LOVE us

EVERYDAY SINGLE DAY

 

(Instagram credit Grief to Glorious Unfolding)

 

Love Sam's mummy