On 23rd we had appointment at royal london for his surgical review. We left early morning, before we left - with paramedics in room and Nurse Ethans SATs went down to 60 and below. I told the nurse who just went hmm and walked out. The paramedics did not seem to be sure of what was happening. S picked ethan who was blue and I asked them to turn the oxygen up to 2 litres which seemed to do the trick. Told nurse when she came in and she said his SATS monitor drives her mad as it always goes off! She was shocked to find his O2 was up to 2 but didnt really say much. The appointment was ok but the doctor said he was breathing quite fast. Back to southend with another appointment for follow up for his NEC. That afternoon he was so hot and head bobbing again - I mentioned to nurse.
Thursday Ethan was again breathing fast and it was discovered that he had at some point pulled his NJ which was now sitting higher then his stomach. In theory he was aspirating. This was discovered by xray I think because of his breathing issue.
His infection marker in his blood was low so I ASKED for ethan to be given a higher dose of diuretics (I asked his nurse). In fact the conversation went along the lines of "his lungs are wet do you intend to leave him out in the sun to dry or shall we increase Diuretics?) the doctor came in to say they would do so. After this his breathing rate decreased and I went home.
Friday morning at 5am I got a call saying Ethans breathing was very fast - they had tried CPAP and I needed to come in. when I got there he was very unsettled and breathing very fast with heartrate of over 200. He was sedated and calmed down and ofcourse put back on the ventilator. I helped the nurses and Dr's as they intubated Ethan at this point. They were short staffed and Ethan was fighting so hard but I also knew I was the best person to be able to help having seen this before in Ethan. I did have to ask for him to be given some VEC a drug that paralyses you so he wouldnt try to fight the vent or pull the tube out. His Vent tube had a huge leak round it. He was brought to St Marys hospital in Paddington.
I believe if action was taken a week before it was - Ethan may not have needed another ITU stay!