Ethan did have a virus after all. He was completly covered from head to toe in a horrid rash. Initally the thoughts were of measles however Ethan is up to date with his injections. It was finally decided that it was tonsilitus and he was given antibiotics. I had one phone call at 5am on 15th August to say Ethan was getting worse however when I got to the hospice he had perked up. Typical Ethan!
During all of this I had to move from Southend to Cambridge - into my own little "cottage". I managed it with some help from my nephew and my neighbours for which I am so grateful. Some good friends travelled to see us all the following day to help unload the van and then it was all down to me to get unpacked and find a home for so many "things" in a small space. We managed even if I had to let go of my bed and sleep on a sofa instead! Ben has his own room at last. Ethan sleeps downstairs, he is getting too heavy for me to lift for a long period of time so I thought it best that he sleeps downstairs. That way a nurse can sit with him should I be able to get any help.
Ethan came home on the 18th August. It took him a good few days to get used to a new home and he refused to sleep! But he soon settled in.
With in the first week he came down with a second chest infection. His SATS were as low as 58 at worst and 72 at best with his respiratory rate climbing up to 120. He was totally grey/blue though in typical Ethan fashion was still playing although having a few mini "pass out" moments from low oxygen.
I soon realised that although I had nurses and Dr's support they really couldnt do much. I couldnt call an ambulance as the hospital wouldnt do anything for Ethan that I couldnt do. It really was just me giving Ethan the medicines I am allowed to give to keep him comfortable and relying on the nurses to tell me if I could increase the dose etc. I did feel however that he was not really that distressed, it was more me then him! I did have to give something to calm him down on the worst night however and it worked. The GP came out to give antibiotics and I was on count down to see if they would work. He also gave me a bright red form which states that Ethan is not for resusitation and not for hospital treatment. I was told what to do if Ethan passed away, and how it would likely happen, and the hospice were ready to scoop and run as I had thought that I wanted Ethan's last moments to be there.
Thankfully after 48 hours Ethan just got better! It took a good week for him to be back to the way he was before.
I am now undecided whether or not I would want Ethan's last moment to be at the hospice or at home with me and I think I will just have to go with what I feel at the time. For me the main reason I wanted it to be at Milton was that I was scared I wouldnt be able to cope with all the medicines etc on my own. Now having got that close I am not so sure. I will do whatever is best for Ethan at the time I guess.
I do have the support of the man in my life which is probably why I am still standing through it all!
At the moment Ethan has been coughing a lot during the day and loads at night, I hope he is not coming down with yet something else. I am also wondering if Ethan's last "chest infection" was a chest infection or just a sign of worsening lungs. Time will tell. What I do know is that it is not cold and flu season yet, then we will be in trouble.
In the meantime I have started the process so that Ethan will go to school for a few days a week soon, just so he can enjoy what he has as he did love school.
Ethan's father has not contacted me since 12th August despite the fact I told him Ethan had a virus. I have always said it is important that Ethan has a relationship with his father and indeed half sister and the extended family, but it just doesnt seem to be happening.
During all of this I had to move from Southend to Cambridge - into my own little "cottage". I managed it with some help from my nephew and my neighbours for which I am so grateful. Some good friends travelled to see us all the following day to help unload the van and then it was all down to me to get unpacked and find a home for so many "things" in a small space. We managed even if I had to let go of my bed and sleep on a sofa instead! Ben has his own room at last. Ethan sleeps downstairs, he is getting too heavy for me to lift for a long period of time so I thought it best that he sleeps downstairs. That way a nurse can sit with him should I be able to get any help.
Ethan came home on the 18th August. It took him a good few days to get used to a new home and he refused to sleep! But he soon settled in.
With in the first week he came down with a second chest infection. His SATS were as low as 58 at worst and 72 at best with his respiratory rate climbing up to 120. He was totally grey/blue though in typical Ethan fashion was still playing although having a few mini "pass out" moments from low oxygen.
I soon realised that although I had nurses and Dr's support they really couldnt do much. I couldnt call an ambulance as the hospital wouldnt do anything for Ethan that I couldnt do. It really was just me giving Ethan the medicines I am allowed to give to keep him comfortable and relying on the nurses to tell me if I could increase the dose etc. I did feel however that he was not really that distressed, it was more me then him! I did have to give something to calm him down on the worst night however and it worked. The GP came out to give antibiotics and I was on count down to see if they would work. He also gave me a bright red form which states that Ethan is not for resusitation and not for hospital treatment. I was told what to do if Ethan passed away, and how it would likely happen, and the hospice were ready to scoop and run as I had thought that I wanted Ethan's last moments to be there.
Thankfully after 48 hours Ethan just got better! It took a good week for him to be back to the way he was before.
I am now undecided whether or not I would want Ethan's last moment to be at the hospice or at home with me and I think I will just have to go with what I feel at the time. For me the main reason I wanted it to be at Milton was that I was scared I wouldnt be able to cope with all the medicines etc on my own. Now having got that close I am not so sure. I will do whatever is best for Ethan at the time I guess.
I do have the support of the man in my life which is probably why I am still standing through it all!
At the moment Ethan has been coughing a lot during the day and loads at night, I hope he is not coming down with yet something else. I am also wondering if Ethan's last "chest infection" was a chest infection or just a sign of worsening lungs. Time will tell. What I do know is that it is not cold and flu season yet, then we will be in trouble.
In the meantime I have started the process so that Ethan will go to school for a few days a week soon, just so he can enjoy what he has as he did love school.
Ethan's father has not contacted me since 12th August despite the fact I told him Ethan had a virus. I have always said it is important that Ethan has a relationship with his father and indeed half sister and the extended family, but it just doesnt seem to be happening.