I think we need to talk about what our needs are, regarding Ivy and Noah’s care. I think that you don’t quite understand what our expectations are of you. I want you to know because, I have come to like you, even trust your opinion and I would like to continue having you as Ivy and Noah’s doctor.
When we first met you, it was after a horrible, sickly Winter. I knew it would be like that because all of my children have not enjoyed good health, so I expected that the babies would be the same.
Our hospital referred paediatrician had been no help, was hard to contact and when we did manage to aquire an appointment, she belittled our concerns. When the twins were put in hospital, on oxygen for a week because we were unable to see her and I went elsewhere, she became angry and said that we could not give the babies ‘bitty’ care, that they needed someone, who knew their history and could treat them appropriately. So we made the decision to find a new paed, one, who could give us good continuity of care. When we asked around, the NICU nurses said you were wonderful. Good with the parents.
With regards to our needs; as I am a registered nurse, I am quite able to manage most things at home for a prolonged period. I am comfortable with asthma plans and medication and I am vigilant when they are ill.
I am not overprotective because we have experienced a neonatal death. I have eleven years as a parent of sickly children and I know how to look after them. I feel that I am looking after their health to the best of my ability. We are their parents. It is what we are supposed to do.
If we make a phone call to your rooms to let you know that the babies are ill, it is because we are starting to struggle. It is not just to say hello. Giving two children nebulisers every two to three hours is exhausting and you often start to second guess yourself, after a week of sickness, in the wee hours of the morning.
We appreciate it when you phone us back to discuss things, it gives us reassurance and helps us to continue on at home. That is basically all we, David and I, as the parents need, unless the children are desperately ill, then we will manage Ivy and Noah’s chronic illness at home.
On the Thursday and Friday of last week, the twins were very unwell and we phoned you as a courtesy, to let you know that we were starting prednisone. You called us back, which was good and asked us to call again on Monday. Sunday saw Noah in hospital and Ivy was very close to it, however we managed to keep her at home. We called you on the day you asked us to with no response. On the Tuesday, when Ivy was worse we called again.
Today is Thursday and we have still had no response. I would have liked to discuss a few things with you regarding medications but as you have not been in contact with us, I have had to make my own decisions on these. I find this quite stressful and worry that I will be doing the wrong thing for the children. It would have been good to run these things by you.
I find it very hard to trust doctors. As you know, the services in our area are poor and to find a good general practitioner is near impossible. Our last GP has just left the practice he was in and so we have to start looking again. You have known Ivy and Noah now for over twelve months, you know the family history and our concerns. We feel that we have built up a good rapport with you and we are guided by your opinions.
Our expectations are that you will be there for Ivy and Noah’s health and for us as their parents. Our only ask is open, honest communication when we need it. We value this the most.
I understand and am thankful that Ivy and Noah’s condition is not life threatening however, constant chronic illness is tiring and often hard to control. It would be helpful to have a good support team, something that is strongly recommended by Westmead Children’s Hospital. We also understand that you are extremely busy and that we are not the only family that you are looking after.
Thank you for everything you have done for us, to date. I hope that you understand our needs a little better now and that you will be able to support these.
Ivy and Noah’s Mum