Please be warned it is not easy reading.
Ethan came home with a bag of emergency medicines, which would be administered if Ethan was suffering in any way to ease any pain he may have towards the end. I refused to look at the medicines and just put them in a safe place. I did not want to think about the end.
I also spoke to the hospice (EACH) about the end of life plan and explained I wanted Ethan at the hospice when the time came in order to spare the other children, and as I was unsure if I could cope.
Bringing Ethan home was just wonderful. I quickly got back to my old routines with him although slightly different as Ethan still could not put much weight on his legs. Just before he came home he crawled again for the first time! The special bed that had been ordered and delivered for Ethan was no longer suitable as we had catered for him not being able to move much! Ethan showed everybody what pure determination could do by recovering a lot quicker then we had thought!
That meant for the time being Ethan had to sleep in his travel cot as his normal cot had been given away when we knew a bed was being ordered!
Ethan did not sleep at home for the first week. He was never a brilliant sleeper anyway but he really did struggle with the new house and woke every 30 minutes at times! Still when I saw his happy little face smiling at me I just had to smile to back.
The children were pleased to see him and have him home. Ben bless him coped brilliantly with the sleepless nights and did not complain, while my step children just adored his company.
I took Ethan out and about as much as I could allowing him to have as much fun as his energy levels would allow and oxygen tanks would last. His oxygen requirement was fluctuating between 1litre and 3 litres. 4 Litres was the maxiumum amount of oxygen anyone was allowed to give.
One week went past and Ethan started to cough, he was colour changing a lot and in the middle of the night had a major desat down to 70 on 4 litres. I called the emergency telephone number that I was given for the pallative nurse. She told me to make sure he was comfortable, which although he was blue and his breathing was awful - he was still happy. The nurse then called out the emergency doctor the following morning (CAMDOC) who came to see Ethan and prescribed antiobiotics.
I was scared that day but knew I had to carry on. Ethan was bored at home and so tired and so despite bad SATS I took him for a walk to the botanical gardens. I had to take 3 oxygen tanks as they were not lasting very long on 4 litres.
Ethan loved the botanical gardens and that day was pulling leaves off, no doubt, potentailly extremely rare plants. That day though I thought to myself "Ethan you can touch anything you like".
We had a good hour or so out and about and then I took him home ready to face the following day.
The following day things were worse. He was still happy in himself and trying to play but that morning when I bathed him he kept falling forward. I thought he was trying to look at something under the water as children do but after the third time I realised he was passing out.
I pulled him out of the bath and checked his SATS, they were in the 50's. He was still happy and playing though! The physio therapist from the hospice came to see us to look at getting Ethan a new bed and while she was playing with Ethan he passed out again.
We both looked at each other. "This is not good" she said. There was nothing I could say to that apart from hope the antibiotics would work. Historically Ethan has responded after day three of medication, and I was hoping beyond hope this would be the case.
Ethan's new GP came out to see Ethan as well that afternoon and gave me a red piece of paper that stated that Ethan was not for resus. I knew why he was there. If a GP sees a patient with a known medical problem within two weeks prior to their death there will be no post mortem....
That night I hardly slept, I was convinced that I was going to wake up and Ethan would not be there any more.
That morning I was frightened to go and see Ethan, but I did and there he was smiling at me and PINK!
I was so shocked to see sure a wonderful and fast recovery! My friends and family called me that day to see how he was and I knew they could not believe it when I told them he was fine after such a dire outlook the day before!
Ethan continued to get stronger and the time came for Ben to go back to school after the summer holiday. I was in another routine by then and I had found a couple of fully trained ladies who would be able to look after Ethan if I needed a break. They were a life line for me as a care package had not been set up for me. I owe them my sanity!
I was able to go out for a few hours a week to listen to music and I even managed to go to a friends wedding. Ethan had another bad chest a couple of weeks later but I marched him, singing to the doctors for antibiotics just in case.
He was getting stronger and started to pull himself up to standing, and he looked very pleased with himself as well! He was singing songs, expecting a round of applause afterwards ofcourse and was just so very happy!
I started to think about putting him in school. He loved school before the illness so much and I knew he would get so much happiness from it, despite the risks of infection. The way I looked at it there were risks to Ethan with just the fact that I had other children around him daily. Ethan's happiness was important and so plans were made to get Ethan assessed and into the cambridge education system.
Just as things were going so wonderfully...
I took some lovely photos of Ethan during his recovery with some memorible ones taken on Friday 13th September with Ethan smiling and clapping with pure joy. He looked really well on this day although had some wonderful colour changes he was just happy!
Saturday 14th September 2013 - Ethan was his happy self although a bit more tired then normal during the day. He had a reddness under his eyes which I thought meant he was due to show signs of a cold again. Ethan loved attention from everyone that day and I took Ethan into my step-daughters ballet school to see everyone.
That evening we all had a late night. Ethan did not want to go bed and so we had a muscial night with guitars out and music on and turned up. Ethan was on his feet dancing away. His step-brother read a book to Ethan and then Ethan played with me for a while making me laugh so very much.
I put him to bed after 10.30pm that night and once more I had taken some precious photos and videos of Ethan that evening.
The next morning when I went to see Ethan it was quite late and it was unusual for him not to have waken me. When I saw him the cause was obvious. He was unconcious, pupils unreactive and very very blue.
I whacked up the oxygen concentrator as high as it would go. I did not care that it was 1 litre above what I was allowed to do. Ethan was clearly having some kind of fit so I went to get my partner who is a Doctor. He confirmed that he Ethan was having a fit and he felt it was due to a lack of oxygen as opposed to any other reason.
Ethan came too, and he was making a horrid bubbly noise. I thought it was mucus stuck in his nose of throat. Ethan was uncomfortable and so I decided to try and suction him to see if that would help. I have been trained on suction but the last time I had to do that to Ethan he was a lot smaller. I have helped the nurses suction Ethan when he was in hospital but this was different. I was in charge.
It was horrible and Ethan struggled and wriggled and cried. I was half pleased he had enough strength to fight back and half so upset that I was clearly upsetting him. It was then I realised the bubbly horrible noise was not coming from his throat or nose. It was coming from his lungs.
I knew then straight away that there was little more I could do.
I called the pallative care nurses and spoke to Harry. She told me to give Ethan some Diazepam which I was happy to do so and it seemed to make his breathing less noisy. Harry said she would come and see how he was doing at 3pm that day. I tried to cuddle Ethan hoping to comfort him but he was arching his back and turning away from me so I put him back in the buggy.
That was 10am Sunday 16th September 2013.
Life carried on around Ethan, he was awake for some of the time and wanted the radio to be kept on. He would wake up cry out and then hear the music and have a little dance. I said to Ethan "Ethan please use your energy to breathe and not dance" but I was pleased he was taking some comfort from it.
1pm : I took Ethan out of his buggy which I had put him in order to keep him upright so that I could change his clothes and his nappy. I laid him on the floor and he went grey, but he wrapped his arms around my neck so tight for a cuddle. I loved that cuddle but I had to make him let go so I place a new nappy on him. When I sat him up to change his top he passed out straight away. That scared me. I put him back in the buggy. I checked his sats and could only get high 30's high 40's as a reading. I thought the sats monitor was broken so tested it on myself. It was working fine. I tried placing the probe on Ethan's fingers instead of his toes and the reading was the same. I decided not to test his Sats again.
I cooked a roast dinner as normal, trying to keep things normal as possible for the other children that was around me that day. All of the children took it in turns to sit with Ethan and try and keep happy. I cooked a beef stew as well for the following day as I knew I was going to be busy regardless.
3pm: Harry came. She looked at Ethan and said to me "This is it". I knew, of course I knew. She asked me if I wanted to move Ethan to the hospice. I looked at my other half, he looked at me and I shook my head. I told Harry I had managed so far for nearly four years, and I would manage again. I did not want to move Ethan anyway and thought that moving him would just distress him. No. I wanted him at home with me.
6pm Ethan was slightly more distressed and so I was given the go ahead (over the telephone) to increase his diazepam dose.
8pm Ethan was really unhappy and would not settle. The noise from his lungs was horrible and I was not sure how much longer I could stay strong for. Harry called and told me it was the last chance to move Ethan. I said no. I was given the go ahead to give Ethan the emergency medications. I was so upset. I refused to be told how to make up the medicine (Diamorphine) and my partner did it instead and admistered the first dose for me. We were only allowed to give him a dose every four hours.
9.30pm Ethan had settled a little and was sleeping.
11pm Ethan was unsettled and Harry called, she said I could give the next dose early and that she was trying to get the ok to give him hourly doses if required, but she felt if that was needed we may have to move Ethan. I told Harry I was pleased she called as I needed to give Ethan his antibiotic dose, she told me "It seems pointless now". Ethan was cold and clammy, I put more blankets on him. Harry told me he didnt have long left.
12am I was still with Ethan. He was thirsty from mouth breathing and was sucking on a clean cloth which he has never done. He bit me when I tried to wet his mouth. I sat stroking his hair, telling him I loved him very much and just saying his name over and over. I sang to him, "Last request" and "You are my sunshine".
12.30am Ethan was settling so I told him not to go anywhere while I got some sleep. I kissed him and went to bed with the video monitor next to me. I knew I would not be able to sleep next to him and I also knew I would need my strength to help Ethan the next day.
Even though I how dire things were I still hoped that there was a small tiny glimmer hope.
I fell asleep watching the monitor at 1am. Ethan was sleeping.
3.30am I woke up with a start and ran to see Ethan. Straight away I could see he was gone. But I did not want to think that. "Look at you!" I said and re-adjusted his oxygen cannuala. His lips were white at the time. Skin pale pale pale. Eyes slightly open - the way they were when was asleep normally and mouth slightly parted. His legs crossed the way he loved to sit. When I moved his head he flopped forward and rested his head on my shoulder. I did my medical checks, felt his skin, cold. Looked at his pupils, fixed and dilated not responding. I thought about getting the big oxygen that can be turned up above 5 litres to give him a blast and then I realised.
He was not breathing.
My darling little boy had waited until I had fallen asleep before he breathed his last breath.
I took a step back and my hand flew to my mouth. Then I kissed his little head and told him I loved him so very very much. I told him I had told him to wait for me and then I sang him "You are my sunshine".
I then told my other half. I was quite calm and told him to get dressed as I would need to call Harry now.
I called Harry and told her he had gone. Then I called my sister to tell her the awful news and I sobbed and sobbed down the phone.
I took a lock of Ethan's hair before Harry arrived.
Harry came to confirm that he had gone (though my partner had already done that) and ask me questions about the last few hours. Then she carried him into her car and placed Ethan into her daughters car seat and drove us to the hospice where she helped me put him into bed.
I changed his nappy and had a coffee that was forced into my hands. I asked for the staff to put the radio on for Ethan.
I sat with him and cuddled him for a while and then went back home. Ben went to school.
Then I started calling people I had to call and people called me. I was so very tired and tried to rest while I waitied for my family but couldnt. So I started to pack away Ethan's cot. Put away his buggy, have a shower.
Once my family came I was still quite calm. We went to see Ethan at the hospice. He had already started to change. I was devestated to realise he had gone and just sobbed. Once again I quickly regained my strength and knew I had to carry on.
I went back home to welcome my step children from school and Ben. Once they had eaten myself and my partner sat them down and told them that Ethan died during the night.
Ben cried out, my step son cried and said "But I wont get to see what he looks like when he grows up!".
My heart broke even more.
The days that followed I was in a daze, I sorted out the funeral with the help of the hospice and was fully supported by my partner. I placed Ethan into his casket myself. I felt like I had to do something and it felt wrong for anyone else to do it.
The funeral was lovely as one can be. The funeral director was wonderful and helpful and respectful at all times.