I was met at GOSH by Ethan's Father and the children. While I was relieved to see him I was still annoyed that it had taken an angry phone call from my sons grandmother to get him to come. I knew he wouldnt spend much time in the hospital anyway and he wouldnt attend any meetings with me. At least I had someone to rant at though!
At GOSH I was given a room in the parents accommodation right next door to the hospital. The room was a big room but no en suite (hardship eh!!). During the stay I swapped rooms with another parent who had a smaller room with en suite and needed a bigger room. Again kindness of strangers.
At GOSH I waited for Ethan to be seen by the Dr's and the person on call was none other then Mark who Ethan had been looked after last time and who had asked me about the DNR. I was nervous considering what had been said to me by Royal London so I said nothing during his assessment. He then looked up at me and said "This is nothing compared to last time!" He then went on to say Ethan was suffering from Morphine withdrawal, that they would increase his dose and then wean him off slowly and that he had asked the surgeons to come and have a look.
I smiled for the first time in days!
I could sleep, though every night for a few weeks I would wake up in the middle of the night sit bolt up right and covered in sweat after dreaming that Ethan had died.
I spent the first few days trying to rest. Chatting to nurses, and getting back to my normal self. At one point a friend Jackie who's little boy Lewis was now at Southend came to see us as he was also in GOSH for a sleep study. She came and hugged me. She had been following Ethan's progress on facebook.
The first few days was keeping Ethan comfortable and then they began slowly weaning the drugs and ventilator. The pulmonary team came to see Ethan and declared he was fine but asked that he was put on nitric oxide for a 24 hours. This was weaned off quickly also.
A week later and Ethan was weaned a considerable amount and at this point was on CPAP pressures through the tube. GOSH wanted to do the nissens but they said the next surgery was three weeks away and did not want to keep Ethan tubed for that time. However that said they were worried about the trauma of re tubing so often.
The surgeons came round and I asked to stay for ward round. The consultant suggested that perhaps Ethan could wait for his surgery and the surgeon asked if they were sure he needed it, and perhaps he could wait longer for it. I interrupted the ward round. Naughty me. I informed them that Ethan had already had a PH study and the result was xyz (I cant remember the number but very high indicating a lot of acid coming back up from the stomach). I said I thought Ethan needed his surgery NOW and I was told that a Nissens surgery is not classed as an emergency and so is always done on scheduled surgeries.
I explained to his surgeon that while I understood that the time between Ethans previous aspirations had been three weeks. I asked him if Ethan was to aspirate before the surgery would he survive. He replied he didnt think so. So I posed the question, what exactly constitutes an emergency then? As if Ethan would not survive another event is it not best to perform the surgery sooner rather then later. The surgeon smiled at me and asked if I was medically trained. No I replied but I might as well bloody well be!
The consultant had turned on her heels and walked away, from that moment she never included me in the ward rounds and would turn her back on me to talk about Ethan making it difficult for me to know what she was saying. In the end I grabbed the registrar and asked him to inform me. He told me that consultant did not like interruptions (incidentally she is a good Dr and was the Dr who had told me back in April that she could get Ethan over this event but not if he had another one). I told him I didnt like rude people.
I was then informed that Ethan was to have surgery in 2 days time, on a Sunday! The surgeon came to see me and he said I was quite right (Mr Curry) and for the first time ever a Nissens would be performed at GOSH as emergency surgery, and that he was calling the consultant anesthetist in too as he felt Ethan needed the most experienced Dr's to hand. So he called his team on a Sunday!
Oh dear, I have a vision of Ethan when they were trying to sedate him prior to surgery, he needed lots of sedation as he was eating the drugs the little drug addict! In the end they gave him a massive dose of morphine but he was still awake so they decided to give him a paralyzing drug as well and said they would sedate him better in theatre. Ethan's eyes were wide open but not blinking and he looked awful. I felt sick seeing him like that. Still I walked him down to theatre and kissed him goodbye before I went for a lay down.
Only 2 hours later I had a call to say Ethan was back on the ward and was on conventional CPAP! I rushed back up and pulled back the covers to see what looked like a cornish pasty type scar. The PEG J was gone and he had a gastronomy. I was shocked at his belly as I had thought it would be done key hole. But there he was. All fixed!
Now they had to wean again the morphine and CPAP. After a few days they started feeding him small amounts into his tummy, I was scared knowing what had happened every time he was fed into the stomach previously. But he tolerated it. The Nissens worked!
As he was weaned off CPAP he was moved to a ward where I amused the nurse in charge by giving over the handover myself as I didnt want anything missed out. I also have my own medical scissors which at one point was the only pair on the ward so I kept having to loan them out for the nurses to cut tapes etc! I would have left them behind but I needed them!
On the ward I was with Ethan from 6am until 11pm if not later. I gave all medicines and feeds. The woman who had swapped rooms with me was on this ward and she would take me into her room to feed me and give me cola. One night she phoned to say her mother was outside and looked up to the ward window to see a commotion by Ethans bed. She had run up to the ward to confirm that it was Ethan and then asked her daughter to call me. She told me she would have called me straight away but wanted to make sure it was Ethan. I ran up to the ward to be told he had dropped his SATS and they didnt know why. I looked at Ethan, Ethan looked at me and I calmly asked if they had changed his oxygen tubing... Yes they said, for a neonatal tube. I explained the tubes were too small and he needed a larger size now, fished a new one out of Ethan's emergency bag and changed it. What do you know...SATS came up....
I was told Ethan would need to be in hospital for a few weeks post surgery, indeed there was another little girl who had just had her nissens and had terrible compilations. Ethan however was fine. 4 days post surgery I saw the surgeon and asked if there was anything they were doing that I couldnt do at home.... He looked at me - smiled and said "in your case I dont think there is...""I want to take him home then" I said.
As Ethan was still on weaning dose of morphine I had to be assessed by the Pain Team and other teams to make sure I could handle morphine at home. There request was that we had Ethans blood pressure checked daily and after a quick call to the PCN team was told we would be given a monitor to use for three weeks when we came home. So now I just had to wait for transport home!
And wait I did! All day and night until eventually an ambulance turned up. There was a delay in that Ethan had a lot of equipment to go home with, but a table on wheels was found and my friends husband and my friend pushed it down to the ambulance for us (as the staff we saying it was unsafe and they were not allowed to do it blah blah). Slightly delay when the driver told me she may have TB and is waiting for test results, and did I still want her to take us home. I said to her "dont you think that perhaps you should not be on ward with little babies, at the least with out a mask? take us home but dont go near Ethan". As I had had the training and was deemed medically capable I did not need a paramedic to accompany in the back anyway. So at 11pm we were on our through the snow home! 5 days post surgery! Again I was told that no one had ever gone home so soon after surgery.
On December 11th 2010 Ethan came home in time for his first Christmas at home!