Went to hospital today and have been told surgery is Friday! Which is great news so just have to get transferred to royal London now! I hope he comes home soon after that - he must do!
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!
Today and yesterday Ethan was snotty, some of it white secrections and some clear. Ethan was smiling lots today, which was great as yesterday he was really grumpy! He pulled his NJ out last Sunday and a new tube was put in on Monday. Maybe why he was grumpy! Southend is trying to get an emergency gastrostomy at Royal London and Nissens. Nissens will tighten the muscle above the stomach to stop the food etc coming back up, which will mean he can be fed into his stomach. I spoke to one of Ethan's previous Doctors at the Royal London, Dr nick who is helping to prod the surgeons.
Today Ethan went into the play room and was playing lovely, laying on a bean bag when all of a sudden he was sick, and it was milk! I stopped his feed and went to get a nurse. They tested the NJ tube and the Ph (which should be above 6) was about 4.5-5 which was not good and would normally mean the tube was in his stomach, which would make sense considering he had vomited. They did an xray and the tube had not moved from day before and the doctor said it was in the correct position. A second PH test showed a low PH as well, but the NG tube was clear. So the feed was restarted. I am looking forward to Thursday's meeting.
So we went back to Southend. I was pleased to see the new house - and BF and kids ofcourse! I just wanted to make a plan for home. It is now almost 9 months since his birth and all I wanted conversations to be about was home. Initailly meeting with Ethans consultant proved hard to come by. It seemed his feeding was the only issue and so I hope we have found a way to combat that. ethan still is fed NJ contionously but the plan is to try to get him to having 6 hours off feeds over night.
Ethan did pull his NJ tube out 9th July they failed to get a new tube in until 12th July. He became upset about not being fed and so his oxygen went up to 2litres! I was so worried, his Xray showed no change and his blood gases were good but his CRP - infection marker was up to 70. He is still on antibiotics - having a 5 day course.
We have a meeting planned for 22nd July to find out if we can take him home! I cant wait.
I have done my life support training and nearly finished my NG training. Hopefully not much more to do!
Today 15th July Ethan was playful, I took him to the play room and had some play time with him. He was so tired afterwards - rubbing his eyes! He was a bit snuffly but I think it could be where he has all his tubes in! The Physio came to see him and listened to his chest and thought it sounded clear so that was reassurring.