When every day of your life revolves around keeping your child alive – be it administering the right medication at the right time, constantly monitoring them for physical changes and/or ensuring they are kept clear of infection or virus risks – it can be extremely challenging to hand over that care to someone else.
When Aidan’s feeding tube blocked two weeks ago on a Sunday, I knew he would need to be admitted to hospital and placed on a drip until the tube could be replaced the following day by a radiologist. Knowing that although he was in good health he would still need to be cared for by the hospital staff was anxiety provoking.
It’s not that I am a control freak. Anthony and I have very good reasons for why we are genuinely concerned about placing Aidan in the care of strangers. For the most part the medical and nursing staff at the hospital are incredible beyond belief but there have been occasions where they have failed to listen to us and the result has been catastrophic for Aidan. Like the time in the emergency department when they insisted on inserting Aidan’s feeding tube without the use of fluoroscopy then held him down during many unsuccessful attempts which resulted in broken ribs and fractured legs; or the many times (too many to count) that nurses have ignored our advice not to heat up his feeds which has led to his milk curdling and his tube needing to be replaced.
The problem is not so much about other people caring for Aidan but more about having to raise my concerns when something isn’t being done correctly. Generally, I accept that everyone does things differently and so long as it doesn’t hurt or harm Aidan then I am happy to go along with it. I can even overlook it when a nurse pushes his medicines in too fast which upsets, but doesn’t harm him. It’s when they are hurting him or putting his life at risk that I find it the most challenging.
The thing is, I don’t like confrontation and being Aidan’s voice and advocate is not a role I enjoy very much. I’ve seen other mothers who have complained too much become ostracised by nursing staff and the care of their child has suffered as a result. Anthony sometimes says my fear of becoming ‘that mother’ puts our son’s life in jeopardy and I hate to admit it, but he is completely right. There have been times when I should have spoken up and I haven’t.
So when Aidan’s tube blocked that Sunday morning, I rang his medical team and asked the on-call haematologist to liaise with the emergency department on my behalf and let them know that Aidan had to have a drip, that they shouldn’t attempt to fix his tube themselves and please, please could they test his blood sugar levels on arrival. I have to admit it’s not the first time I have called on Aidan’s primary care team to play the role of ‘bad guy’ on my behalf.
In the five years since we have been involved in the hospital system I have learnt a lot. Getting the most out of the medical and nursing staff requires a nice-as-pie approach with a hint of intellectual snobbery that indicates to them that you know what you are talking about and you know when they’ve stuffed up. However, applying this approach is easier said than done when emotions are high and you feel like you’re talking to a brick wall. I know in time I will grow into my new role as advocate but for now I’m eternally grateful that I have an amazing medical team supporting me.