I haven’t blogged in a while, I haven’t felt ready. But it is Sepsis awareness day and I could not let that pass. I have had a ‘blog post’ written up by pen in my notebook that I wrote or scrawled not long after our journey with sepsis came about… But I could not post it. I could not bare to even type out the words. Today I got reminded that the reason I wrote down our journey was to share and hopefully raise awareness, hopefully get the word out of the signs and symptoms to look out for, to get one parent or care giver to ask when a medical proffessional in similar circumstances we were in just to ask… “Could it be Sepsis?” I so wish I had the power of knowledge to ask this. I knew something was deeply wrong but I felt dismissed. Here is to hopefully saving a life.
Let’s go back to the beginning of the year February 2019.
Owen our son then age 6, Who has Cerebral Palsy and other complex medical needs, is prone to being ill particularly during the winter months. He gets poorly often but mainly can be treated at home.
We knew Owen was becoming unwell as he was not sleeping at all at night. I spent many hours cuddling him on the sofa during the small hours.
By the Wednesday I knew he had the beginnings of a Chest Infection so took him to the GP to get his usual dose of antibiotics ‘Amoxicillin’. Soon diarrhoea began not uncommon while he was on aantibiotics so I stopped feeds. Owen is tube fed through his gastrostomy (a tube or in his case a ‘mic-key’ button that goes straight into stomach) Owen can not eat orally at all. So like I said I stopped feeds and started him on diarolyte to keep him hydrated.
During the early morning Owen seemed to be worsening. He vomited dark green bile and I hadn’t had a wet pad for 24hrs which is not like him. I decided to make another GP appointment stating all the new symptoms that concerned me. The GP was a locum and said it was hard as he had never met Owen before and didn’t know how he was normally. I felt he was saying because of his disabilities the fact he was quite lethargic could just be ‘his normal’ I said it was way out of character and I was really worried. I have handled many chest infections and this just didn’t feel right. The GP assured me it was all due to his chest infection and to just carry on with the antibiotics. I asked about Owen becoming dehydrated suggesting I should carry on wth the diarolyte… The GP said ‘Yes that’s a good idea’ I felt dismissed and vowed to take him to A&E if he didn’t get any better real soon.
During the next two days Owen did make a little improvement so I started him back on his feeds. I was hopeful again. Then Sunday came and he vomitted black sick. I panicked and we set off up to A&E.
A&E was busy. We have a green card so we get seen as a proirity and were seen quickly. We were told that they would increase the use of his inhaler that he has from 2 puffs to 10 every hour or so and see if this helped. No beds were avaliable so we sat in the waiting area with Owen in his wheelchair. Owen’s chest was much better sitting up so this was not right but ok. Time moved slowly between observations taking place, still in the waiting area, more more of his inhaler was given. The Greatest Showman film played on the DVD player on a loop. The first time was great… It is the only film Owen will sit through… but by the third time of watching it, it was just too much. Next a Nurse came and said we were going to moved up to the Childrens ward for closer observations.
Still having his inhaler, the consultant sad when he could manage 4 hours between using his inhaler we could go home. They said it too the little girl opposite so it must be common practice.
It was getting late, Owen was still needing his inhaler every 2 hours. A new Consultant came and said he would rather keep Owen overnight. We agreed. Alex went to get myself and Owen an overnight bag. Little did I know what was to come.
Ok so the next part maybe upsetting, some may not want to read much further… but it is all part of the journey ad to leave it out will be little just how dangerous Sepsis can be.
Short version we were the next day bluelighted to St Mary’s London Hospital PICU spent 2 1/2 weeks there another week back at our local hospital it was many months till he made a full recovery but he did.
If you want to know the full story read on.
Hospital beds and Owen don’t mix, he has a full sleep system at home so getting Owen positioned comfortably was a mission. Alex did bring in his head support cushion but this still didn’t help much. By 2am I gave up and sat him back in his wheelchair. By 3am Owen got sleepy so I again tried him in his bed to settle him propped up with as many extra pillows the nurse could find. He didn’t get too much sleep with having Obs done and his inhaler given through out the night. Owen hates having his inhaler he protests so much thrashing his head about to avoid the spacer mask.
At 7am medicines and another round of hs inhaler were given, which again made him cross, again he was protesting, so full of fight. Owen soon dozed off after this.
At around 8 to 8.30ish someone handed me a tray with tea and toast on it, it was then I realized I hadn’t had anything to eat for so long now. I settled down on my pullout bed to eat my breakfast. I looked up at the bed as I took a bite & noticed Owen’s eyes were open. “Oh good morning Mr O I didn’t know you were awake” I said to him. That was the start of our hell.
Owen just stared back at me with such a vacant look, “Owen, Owen..?” I called as I jumped up to touch him, he was freezing. I saw the big red button was about the press it then heard foot steps behind the curtain, it was the Matron coming to say hello. Owen then started fitting, not whole body convulsions… just his leg shaking and eyes rolling. I actually can not remember what I said to her, I can’t remember who pressed the red button, I just remember one second I was standing next I was pushedalong to on the corner my bed trying to hold Owen’s hand as doctor after doctor, Nurse after Nurse came. With my free left hand I grabed my phone and sent a text to Alex. “GET HERE ASAP”
Soon Owen’s bed was being pushed out of the ward into the high dependency bay, me still holding his hand or rubbing his head. That’s when I and. Nurse next to me saw a couple of small purple freckles that were not there a few moments ago. Sats were dropping they couldn’t get a line in he was shutting down. I saw things I really shouldn’t. I think they forgot I was there. At some point a member of staff led me away. I called Alex who was on his way, he had literally banged on the classroom window to get Florence in the class before school started as he recieved my text, ran home and jumped in his car. He was desperately trying to get here but was stuck in traffic. I worried if he would make it in time.
I went back to Owen, they wanted to move him to another room, he needed to go on the ventilator. Alex came and we were shown to the parents room while they put him on the ventilator, a member of the carer team made me a cup of tea. I could not drink it but felt bad to reject it (Weird where your mind goes… I also felt rude I had just left my tea and toast thrown across my bed) so I just held onto my tea,, but I felt too weak and started shaking so I had to ask alex to take it away.
We went back to see if we could be with Owen. We were told The CATS team (which stands for Critical Acute Transport Service) had been called and we were going to get transferred to A London hospital with a Paediatric Intensive Care Unit, but they couldn’t tell us which one till they got here.
Wee stayed for ever, the room was packed full, our little man just lying. Owen was premature and spent so many weeks on a ventilator as a tiny prem baby it all felt so familiar, but so so wrong this was our boy, our cheeky full of smiles and character boy how had this happened?
Owen was now ‘stable’ enough on the ventilator for us to make our way back to the parents room to make various calls to family. I called my sister first, she said was coming right away to look after Owen’s sisters who were at school at this point. I didn’t even need ask.
The CATS team came. It was a long process of getting Owen ready for transport. He also needed a MRI scan before he left due to having his seizure.
Both the CATs team and All the staff at our local hospital were truly amazing that day.
The next few hours were a blur but then all of a sudden we were in the back of an ambulance speeding up the M1 torwards London. Blue lights flashing, sirens blarring. My anger rose a few times when the ambulance had to use the horn as someone wasn’t clearing the way . We arrived at St Mary’s Hospital Paddington London so fast.
I have never been to this hospital, I had no idea where we were. By this time is was dark so mad it even more mysterious. We were led to the PICU met the staff and then led to the parents room where we waited for Owento be transferred from the CATS tea equipment to the hospital equipment.
Shell shocked we were greeted by a lovely family, who tried to comfort us and gave us reassurances that this was the best hospital. 20mins in another parent came in, whose boy had just been transferred also. The family again comforted her thesame way had done us. The lady started to cry feeling grateful she was no langer alone soon we all were crying. The more we talked the more we all realised how much we all had in common, all 3 of us had children with Cerebral Palsy all were fighting for their lives.
That parents room became home. The staff and other parents became so famili like family. We were in a bubble that none of us wanted to be in. The PICU hospital has a charity that puts parents up in a hotel literally down the road from the hospital. This was such a relief. Very late at night we made our way to the hotel. All we had on us was one holdall that Alex had packed for me the nght before with a few bits on for me and Owen. The CATS team gave us a littlebag they give to all parents with a small fold up toothbrush, tiny toothpaste a bottle of water and a couple of custard creams. That is all we literally had with us.
Owen spent just over 2 weeks in St Marys, the staff were amazing. Over the frest few days we found a M&S and a superdrug and managed to buy a few supplies from there. We felt so alone, so away from the world. It was just Alex and Me sitting at Owen’s bedside again seings things no parents should. Our girls were at home, we tried to facetime amuch as we could. Timings for this were hard. Sometimes it was impossible leave Owens bedside, sometimes we couldn’t let them see our red raw eyes. It was so so hard.
We moved back to our local hospital andspent another week there. This time the girls could visit. Things were looking up and home was insight.
Owen did go home, but it took months fo him to recover.
I am glad to say he is more or less fully recovered. Alex and I are still dealing wit the effects of our trauma. I believe PTSD is real in circumstances like ours. Tt is why it took me so long to write this. I hope someone read this.
But mainly I hope someone reads the sigs and symptoms and remember them i they feel they need to.
I hope it helps.