We had got home in time for Ethan's first birthday. A few weeks went past, we got to Firework night and Ethan sat inside watching the fireworks. Then once again it went all so wrong. Ethan was breathing really fast again and on 11th November 2010 I had to call 999 as Ethan was totally purple and struggling to breath.
I was so used to all of the drama, had a bag packed already (though had not packed any winter clothes!) syringes ready, medicine ready. We were taken to Southend and then straight to St Marys hospital PICU and he was ventilated. Another aspiration event. This time I could see he would get better, pressures etc were not too high. Once again I was in hotel room and once again I made friends with the other parents. Watching videos in the parents room of an evening as none of us wanted to be too far away from our children, telling parents unused to ITU what the machines meant, making sure everyone eating (as they was me) and playing games by our babies bedsides. I must say they kept me sane!
This time I was not letting him come home with out his surgery. So as soon as he was off the vent (10 days later) plans were made to send him to Royal London for his Nissens surgery. I was told to expect to spend xmas in hospital.
The day before Ethan was moved the consultant picked Ethan up and forgot he was attached to his milk, and pulled moving his PEG-J. It was reinserted but the next morning had come loose again and the weaning doses of morphine was missed. In fact all meds were missed. When he got to Royal London I asked for them to prescribe Ethan with IV meds instead, but the Dr's were busy. By 10pm that evening Ethan was in distress, very hot and wriggling up and down the cot. Things were not right, his heart rate was sky high as was his breathing. Morphine was given but there was no change. We were on the gastro ward and the charge nurse was giving one to care to Ethan. I was beside myself, begging them to take him to ITU/CCU but I was told he didnt need it. They went to give another dose of morphine and I pointed out that morphine can cause breathing problems and in fact cause you to stop breathing at a high dose. The charge nurse prevented the Dr from giving the dose and informed him that he agreed with me. That he was with holding the dose until they told us a clear plan.
I asked where the emergency equipment was if Ethan was to stop breathing, to be told it was on the floor above in PICU. I was told there was not bed available and they thought Ethan did not need ITU care. I replied if you have no bed take him to a hospital where there is one. In the end I went to call Southend to see if I could get support from the Dr's who knew Ethan. I couldnt reach anyone seeing as it was 4am but that meant Ethan was taken up to PICU. But my nightmare was not over yet... Ethan was moved to the PICU/CCU at Royal London at 4am. He was moved to a side room, a huge room which could have easily housed two babies and I expect at some point it has done. There was Ethan in this cot, with the nurse who had been so adamant that he did not need PICU looking after him. He was in a lot of distress, writhing so much in pain that he was moving up the cot. He was breathing very very fast, was barely conscious, his heart rate was over 200 and he had a high temperature. I was exhausted from the fight to get him the care I thought he needed and collapsed in the chair at the side of the room. The nurse (she was the charge nurse) was telling she didn’t think he needed to be there and that they were not admitting to PICU as she thought he would be back on the ward within 4 hours.
I curled up in the chair and tried to rest my eyes but I couldn’t. There was no water on the ward, I had not been told if there was a parents room or not and I had already been told their parents bedroom they had set aside were fully booked. At 6am a nurse (not Ethan’s nurse) told me that there was an unused ward where they kept stock that had a bed in that she had made up for me if I wanted to put my head down. I travelled down to the room that was full of spare beds, linen and cleaning stuff and just lay on the bed. I slept for two hours before being woken up by a shrieking member of the domestic staff who had not been told I was there! Bleary eyed and my nerves shot to pieces already I washed my face, put on my war paint and went back to the PICU to see how things were.
Ethan had been moved onto the open ward, it was clear that he was not going back to the gastro ward any time soon and so he had been “admitted”. The nurse’s had changed shifts (thankfully) and so Ethan had some one new looking after him. There was no change apart from the fact he did not appear to be aware of anything. He was still in distress. The Dr’s were due on their rounds and so I sat on the chair and waited, and waited. A kind nurse brought me some water and some biscuits after correctly assuming I had not eaten or had anything to drink. I was asked to leave the ward for ward round so I managed to grab a much needed coffee and something that resembled food before heading back for their verdict.
When I got back to PICU Ethan was being put on CPAP. Normally he hates CPAP and fights but he just laid there writhing not really noticing what we were doing. I helped put the mask on, but it was clear the mask was too big for him. In hindsight I should have suggested they go up to NICU ward to get a better fitting mask! The leak around the mask meant Ethan was not getting the benefit of it, so I held it on to his face myself.
The Dr came round to say that she was not sure what the problem was, I told her I knew what the problem was, he had gone into withdrawal, had not had his medicines the day before and this was the result. I sat all morning holding the CPAP mask to Ethan’s face. I was so very exhausted and felt very alone. I had called Ethan’s father the night before at 3am and initially got no answer, when he finally did answer he said “what do you want to do about it”. I was furious although knew he was finding it hard to cope.
All day I sat by Ethans side, in the afternoon after being reassured by the nurse that she would hold the mask I went into the newly found parents room, closed the blinds and tried to rest for a while. I was woken up by an American woman swearing loudly as she tripped as she came into the dark room.
We spoke a while and then as more parents came in for a snack I went back to Ethan.
There was no change, if anything he was getting worse. His SATS were awful, they were finding it hard to get a SATS reading at all due to how much he moving and by then his circulation was not great. His hands and feet were freezing. In the evening another nurse filled a glove with warm water to use a hot water bottle for his feet, while I layered him up in socks over socks.
All through the night I sat in the chair beside him, still no rooms for me to sleep in. I would try for 30 mins or so to get some sleep in the parents room on the tiny sofa. In the end I settled for curling up in the chair beside his bed only to be told “you cant sleep here”. My reply “Just watch me”.
It wasn’t really sleep any way as I was still very much aware of what was happening.
The next day, I was totally shattered in every way. Another ward round. This time afterwards the Dr told me by Ethan’s bedside that his lungs were “rotten”. Rotten! An apple is rotten, not my sons lungs! That she felt enough was enough and she did not want to escalate treatment beyond CPAP. He had just come off the ventilator and she said going back on would be going backwards. I told her to do everything and not to withhold any treatment, that I would not agree to just sitting back.
I went outside to call Ethan’s Father and I was sobbing and sobbing and sobbing. Explaining what had just been said, and that I was just so very tired hungry and weak, that there were no rooms for me.
Irene called me from Greece, she told me not to give up and that she would ask her tenants in her East London apartment to allow me to stay so I could get some sleep. I was so thankful for her kindness but just could not leave Ethan.
I went back to the ward and was told that a woman had just been in and handed over her Sick children’s trust room key with the instructions to give it to “Ethan’s Mum”. I was bowled over and wondered who this person was that knew Ethan’s name? I went down to the Gastro ward where I was told the Mother was and discovered it was American woman from the day before. She explained she had heard me on the phone and was devastated for me and knew what I needed was a good sleep to get my strength to fight. I was in tears. She explained her husband was using the room and they did not need it any more. She gave me a hug and said her husband would walk me to the room later that day.
The kindness of strangers..
Back on the ward and Ethan was put on in a helmet that would apparently work like CPAP but would not be able to provide high pressures. I felt like this was downgrading his treatment, but the Dr’s felt that holding his mask to his face was not a solution. He had various blood tests done, which was hard to see as every vein had been blown due to his previous admissions. The Dr’s used a UV? Light in the end to be able to see the blood flow better. The first time I had seen one used and I thought it was a fantastic idea! In the meantime with Ethan still moving about (though less so as he was tired by now) it meant the hood was covered in blood.
He looked an astronaut with the hood on and had braces to tie it on so he looked almost comical.. if he hadn’t been unconscious and so very pale. It was awful to see.
That evening my Aunt and Cousin Emma came to see Ethan, Ethan had by that point stopped thrashing about so much but was not aware of anything, he just lay there with his eyes half open struggling to breathe. They took me out for something to eat and reprimanded me for not having any warm clothes with me, and then bought a huge amount of food for me to take back with me.
That evening I overheard the nurses discussing another child that was about to be brought in, Ethans curtains was closed and they seemed to think that I couldn’t hear. They were saying that the unit was full and they were short staffed but that it was ok as this child was on a DNR anyway!
That night I went to sick childrens trust room, my suitcase was heavy and huge and the wheels had broken so I was thankful that my new found friends husband had taken me there. In my wisdom I told him he didn’t need to help me to the room and then discovered it was two floors up! I got the suitcase half way up and then it fell back down the stairs with me with it!
I finally managed to get it up to the room and I just fell into the bed and slept.
Monday morning.. day three.
I was woken by the Dr asking me to come in. Another meeting this time telling me that they had discussed Ethan with the NICU drs who had told them that Ethan had had a difficult time in NICU, was hard to ventilate and his lungs were badly damaged. They discussed that he had NEC surgery and then his admissions for aspirations. They informed me that they thought Ethan was aspirating his saliva. They said that they thought it was time to let Ethan go.