On 21st July I was giving Ethan his meds and tested his NG tube prior to giving the medications and noticed that he had milk in stomach where milk should not be. Thankfully the registrar was on hand to re-adjust the tube and so it was relatively painless.
The meeting on 22nd was not as I hoped. The consultant said that she was not happy to let Ethan go home on NJ feeds and that he would need a gastrostomy before he could go home. I tried to argue that he would get better one to one care at home, which is what he needs but she felt he was safer in hospital. I did explain that most of the time that he has moved his NJ it is me that has noticed, and me that has noticed that he was unwell but again she did not budge. She also said she had booked appointment at Great Ormond street for gastro review for September! I explained this was too far away. I have been very optimistic and positive as I could see an end to it all. But could do so no longer. I explained I would them to ask Royal London to do the surgery, and emailed the surgeon myself to make sure that he was being treated as an emergency. The consultant still wanted to try GOSH as she wants all his care in one place but I did stuck to my opinion that Royal London would be quicker and better as they have his surgical history.
The time that Ethan has "off his feed" for 4 hours a day has been changed to during the day so that I can take Ethan outside! The PCN and consultant at the meeting said they will order home oxygen so that we can take away from the hospital for a few hours each day! This will so please Ethans brother and sister!
After a few false starts when I was told that the nearest review date for surgery which is not even a date for surgery was 20th august, I got an email from the surgeon to say Ethan can be transferred to The London this week for potential surgery monday! I am so happy - I called Southend to let them know and will be at the hospital first thing to speak to the doctors about the plan. Ethan has a PH study or something of the like at GOSH in 2 weeks time apparently - I hope we can get it moved to a closer date!
The meeting on 22nd was not as I hoped. The consultant said that she was not happy to let Ethan go home on NJ feeds and that he would need a gastrostomy before he could go home. I tried to argue that he would get better one to one care at home, which is what he needs but she felt he was safer in hospital. I did explain that most of the time that he has moved his NJ it is me that has noticed, and me that has noticed that he was unwell but again she did not budge. She also said she had booked appointment at Great Ormond street for gastro review for September! I explained this was too far away. I have been very optimistic and positive as I could see an end to it all. But could do so no longer. I explained I would them to ask Royal London to do the surgery, and emailed the surgeon myself to make sure that he was being treated as an emergency. The consultant still wanted to try GOSH as she wants all his care in one place but I did stuck to my opinion that Royal London would be quicker and better as they have his surgical history.
The time that Ethan has "off his feed" for 4 hours a day has been changed to during the day so that I can take Ethan outside! The PCN and consultant at the meeting said they will order home oxygen so that we can take away from the hospital for a few hours each day! This will so please Ethans brother and sister!
After a few false starts when I was told that the nearest review date for surgery which is not even a date for surgery was 20th august, I got an email from the surgeon to say Ethan can be transferred to The London this week for potential surgery monday! I am so happy - I called Southend to let them know and will be at the hospital first thing to speak to the doctors about the plan. Ethan has a PH study or something of the like at GOSH in 2 weeks time apparently - I hope we can get it moved to a closer date!