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On Saturday 13th of October 2018 I returned home from work to greet Arlo who was asleep with a scorching temperature. Upon waking Arlo we called 111 to try and get an emergency appointment. Whilst holding Arlo, my Mum instinct kicked in and I called for an ambulance. As soon as we ended the call Arlo began to shake - he was having a seizure. The ambulance team arrived and took Arlo into the back of the ambulance as they called for the paramedics. Once they arrived they gave Arlo a specific medicine to stop seizures but unfortunately this not only stopped the seizure but also stopped Arlo from breathing. The ambulance team rushed Arlo to hospital whilst breathing for him and on arrival we were taken to a small room whilst Arlo was taken into resusatation. After the longest 10 minutes of our lives the Ward Sister came out and asked us if we would like to see Arlo. We stepped into the room of 20 people surrounding our Son as he was lying still on the stretcher. We were told to talk to him to help him come around and eventually, thankfully - he did. Arlo had limited movement in his left side which eventually came back slowly. That night Arlo was well within himself, he was sleepy but his usually cheeky self that we all know. The following day Arlo had to be taken for an MRI and Lumbar Puncture to see why he had limited movement in his left side as this is also the side the seizure started in. Arlo was dressed and gowned as we walked him down to be Anethatised ready for his MRI and LP. We came back to the waiting room after 45 minutes which we were advised this is how long the procedure would take. After 2 hours the consultant came in to the waiting room to inform us that upon waking Arlo from sedation he unfortunately again had another seizure and had to sedate him again to put him back to sleep. At this point they allowed us to see Arlo before they took him to PICU (Paediatric Intensive Care Unit). Before being allowed to see Arlo in the PICU we were sat in the waiting room, both in silence with endless questions running through our minds. The Consultant came into the room to advise us what to expect as we walked into the PICU. We were warned of the multiple tube, wires and monitors we should expect to see. We were escorted to Arlos room in the PICU, Arlo was having a few small seizures at this point so they gave him a different anti seizure medication and we held his hand until 2am when we were reassured they would look after our little boy so we could get some sleep ready for the next morning when we would be hopefully trying to wake Arlo up from his sedation. As promised, that day they turned down his medication and Arlo began to wake but just as Arlo began to wake his temperature spiked and his heart rate went above 200bpm (between 100-140bpm for Arlos age is acceptable). At this point they had to sedate Arlo again and put him onto a cooling mat overnight to reduce his temperature. We returned to the Ronald McDonald house to get more rest as instructed as again we were informed nothing was likely to change at this point but they would call us if they needed us. The following day we waited for the doctors plan for the day, at our turn for the doctors walk around they informed us they were happy with his temperature, heart rate, blood pressure and brain activity to again try and wake Arlo from sedation. Again the medication was put down and after 5 minutes Arlo began to move. This time he was calm, he wasn't shaking and didn't look distressed so they allowed for him to continue to slowly wake. That whole day was spent observing Arlo and gradually allowing him to wake up. We had our first cuddle that day and it felt surreal but uplifting. Arlo couldn't open his eyes but was moving and attempting to cry and cough and most importantly breathing on his own. Again that night we were advised to get some rest as Arlo was going to be more alert the following day as long as everything went to plan. We followed their orders and the following morning we returned to the room to be told he had multiple cuddles with the nurses during the night and slept on his tummy with his legs poking out the cot bars which made the nurses laugh. Since this point Arlo has been moved to QA Hospital and has gone on to get stronger and stronger each day. We are immensely proud of how brave he has been and how he can still smile after what he has been through.
Our thanks and why we are doing this:
We would like to specifically thank the nurses who cared for Arlo in the PICU Claire, Bethany, Caroline, Ella, Jen, Marrissa, Emma and in particular Donya. They not only cared respectfully for our Son but they were our shoulder to cry on and most importantly a friend. They all allowed us to help with Arlo's care from brushing his hair to changing his heart rate monitor. The little things that made us feel like he was still our baby. We would like to thank Donya for making us feel it was okay to finally smile, we needed her more than she will probably ever know.
We would like to thank the Psycologists for their ongoing support through this time and allowing us to know that it is okay not to be okay.
Finally we would like to thank the consultants for their ongoing hard work to find a cause for Arlos seizures and their support through this hard time.
At this current time we are still trying to find the root cause for Arlos seizure as the results for his EEG, MRI and LP came back clear. However we believe it to be because of the temperature spike from having an Enterovorus. Arlo is being diagnosed with epilepsy due to having more than 3 unexplained seizures.
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Oct 27, 2018
So glad Arlo is on the mend. Love from Rhys, Laura, Riley and Finley xx
Oct 23, 2018
Oct 22, 2018
Oct 20, 2018
Oct 20, 2018
Oct 20, 2018
I can't even begin to imagine what you have all been through! What a fantastic job these unsung heroes do every day, I'll gladly support them. I hope Arlo can come home soon xx
Grandad and Nanny Cher xxx
Oct 19, 2018
So pleased that Arlo is getting better, so proud of you both for how you have held yourselves together and so thankful to the wonderful staff at SGH and in particular PICU for looking after you all x
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