My Premature baby - born 16 weeks early
Getting back to Southend was fantastic, but I was scared as well, I felt safe at GOSH - after all if any one help they can right! I was met at the hospital by S and eldest son after not seeing them properly for weeks! It felt emotional, and even more so when we found out the room we was going to be put in was the same room Ethan had his collapse in!
Ethans oxygen requirement was still higher then I liked (at 1.5 litres) but his blood gases were good and he was doing well!
A week went past, because of the infection risk to Ethan we restricted vistors for Ethan to just mum and dad and brother and sister. Though the kids were instructed not to touch him too much! Maybe a little over the top but we knew what could happen he if was to get another bad infection!
The PH study came back inconclusive, there was not enough data apparently. It is uncertain as to whether or not it will be repeated.
His oxygen came down a little to 0.5 litres and then he pulled his NJ tube out. Because of the uncertainty around whether or not Ethan has reflux I was very worried about Ethan being fed direct into the stomach without guidance from GOSH. Southend tried to get a new NJ in but they are inexperienced with NJ feeds and Ethan was very hungry. He was so upset his oxygen requirement went back up to 2 litres and he had a temperature so he was given antibiotics. For 48 hours Ethan was not fed (just had fluids given to him). GOSH apparently could not be reached by phone for advice, and eventually I relented (under extreme duress) to allow Ethan to be fed via NG. That conversation was horrible with a Dr telling me they needed to feed him or he would die and me saying but if you feed him into his stomach GOSH said he will die! I had no option in the end but to agree to feeds being restarted though asked for it to be put in his notes that it was under duress.
I must say almost immediatley he calmed down and his temperature went down as did his oxygen requirement. His milk was slowly increased (although thickened at 18% neocate) and though he was not on full feeds again it was looking good.
He was more aware then ever before and had began to try and roll over, which tired him out but at least he was trying! His muscles were getting stronger and he was smiling and cooing.
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Current day 5/6/2010
The meeting with the doctors to speak about what is needed to get Ethan home is on 11th June.
However 4th June Ethan has now developed Noravirus and a chest infection. He pulled his NG tube out and when they replaced it they managed to get into his NJ position which they have decided to leave it that place as it is safer with Noravirus to be passed him stomach.
He wont be able to leave hospital with Noravirus, and he I dont think he will be able to progress his feeds with it either. He needs to be on at least 2-3 hourly feeds (called bolus feeds) before he comes home, and you can only have bolus feeds NG not NJ. So we have gone back a few weeks now. All I care about right now is getting him better. I left him today and he had quite a temperature and just wanted to sleep most of the day, I guess if he feels poorly then that is all he would want to do. He did also start to have a slight cough which worries me. I just have to trust the doctors.
Ethans oxygen requirement was still higher then I liked (at 1.5 litres) but his blood gases were good and he was doing well!
A week went past, because of the infection risk to Ethan we restricted vistors for Ethan to just mum and dad and brother and sister. Though the kids were instructed not to touch him too much! Maybe a little over the top but we knew what could happen he if was to get another bad infection!
The PH study came back inconclusive, there was not enough data apparently. It is uncertain as to whether or not it will be repeated.
His oxygen came down a little to 0.5 litres and then he pulled his NJ tube out. Because of the uncertainty around whether or not Ethan has reflux I was very worried about Ethan being fed direct into the stomach without guidance from GOSH. Southend tried to get a new NJ in but they are inexperienced with NJ feeds and Ethan was very hungry. He was so upset his oxygen requirement went back up to 2 litres and he had a temperature so he was given antibiotics. For 48 hours Ethan was not fed (just had fluids given to him). GOSH apparently could not be reached by phone for advice, and eventually I relented (under extreme duress) to allow Ethan to be fed via NG. That conversation was horrible with a Dr telling me they needed to feed him or he would die and me saying but if you feed him into his stomach GOSH said he will die! I had no option in the end but to agree to feeds being restarted though asked for it to be put in his notes that it was under duress.
I must say almost immediatley he calmed down and his temperature went down as did his oxygen requirement. His milk was slowly increased (although thickened at 18% neocate) and though he was not on full feeds again it was looking good.
He was more aware then ever before and had began to try and roll over, which tired him out but at least he was trying! His muscles were getting stronger and he was smiling and cooing.
_____________________________________________
Current day 5/6/2010
The meeting with the doctors to speak about what is needed to get Ethan home is on 11th June.
However 4th June Ethan has now developed Noravirus and a chest infection. He pulled his NG tube out and when they replaced it they managed to get into his NJ position which they have decided to leave it that place as it is safer with Noravirus to be passed him stomach.
He wont be able to leave hospital with Noravirus, and he I dont think he will be able to progress his feeds with it either. He needs to be on at least 2-3 hourly feeds (called bolus feeds) before he comes home, and you can only have bolus feeds NG not NJ. So we have gone back a few weeks now. All I care about right now is getting him better. I left him today and he had quite a temperature and just wanted to sleep most of the day, I guess if he feels poorly then that is all he would want to do. He did also start to have a slight cough which worries me. I just have to trust the doctors.
Looking at his toys!