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On the 9th of August Ethan had his surgery. It went very well (thank you to Simon Phelps the surgeon). Ethan was happy and smiling from the very minute I went to get him from the surgery. He was a different baby, he is now so vocal and so happy, laughing and chatting all the time.
I made a complaint about the amount of time it was taking to get oxygen either at home or the portables needed to take Ethan outside of hospital grounds. All of sudden Oxygen was being ordered as was the feeding pump! I will say since then the PCN team have been lovely and very helpful! We went back to Southend 12th August and we was discharged 14th.
Bringing him home was almost an Anti - climax. We had been waiting so long and it felt like it had taken so much energy to get him home. However I loved it! Just waking up to him is fantastic!
That said we have not seen the last of Southend, we have been back almost every week as his breathing has been getting faster. Maybe to do with the Diuretics being stopped/reduced. So as of tonight these have been increased and fingers crossed this helps. We was admitted over night last Friday but he is sooo happy. Xray was good and his CRP level (infection marker in the blood) was normal. His blood gases was also good.
I also got to meet more remarkable parents, the parents of a little boy called Milo.
I now intend on setting up a Parents Network of experienced parents who have had their children in hospital for a long time, who are able to visit the local hospital to talk to other parents to offer support and guidance.
Ethan is putting on weight since the operation and his brother and sister loves having him around.
I now know a lot more about the human body!I get asked by doctors if I am medically trained, I reply, no just trained in Ethan!
I made a complaint about the amount of time it was taking to get oxygen either at home or the portables needed to take Ethan outside of hospital grounds. All of sudden Oxygen was being ordered as was the feeding pump! I will say since then the PCN team have been lovely and very helpful! We went back to Southend 12th August and we was discharged 14th.
Bringing him home was almost an Anti - climax. We had been waiting so long and it felt like it had taken so much energy to get him home. However I loved it! Just waking up to him is fantastic!
That said we have not seen the last of Southend, we have been back almost every week as his breathing has been getting faster. Maybe to do with the Diuretics being stopped/reduced. So as of tonight these have been increased and fingers crossed this helps. We was admitted over night last Friday but he is sooo happy. Xray was good and his CRP level (infection marker in the blood) was normal. His blood gases was also good.
I also got to meet more remarkable parents, the parents of a little boy called Milo.
I now intend on setting up a Parents Network of experienced parents who have had their children in hospital for a long time, who are able to visit the local hospital to talk to other parents to offer support and guidance.
Ethan is putting on weight since the operation and his brother and sister loves having him around.
I now know a lot more about the human body!I get asked by doctors if I am medically trained, I reply, no just trained in Ethan!