The night Martha Grace came out of theatre after her 1st operation, I walked to her bedspace to find a team of Surgeons, Doctors, and Nurses frantically trying to stabilise her. No one had the time to stop to talk to us and I stared at a monitor (like the one pictured) and had no idea what those numbers meant. My baby girl had wires and tubes covering her entire body and her chest had been left open. It was the most overwhelming scene I've ever had to deal with. I remember grabbing the arm of an SHO called Warren and made him explain what every line meant, what her numbers should be at, how we can get her to those numbers, and what would happen if we can't get her to those numbers.
Fast forward to open heart surgery number 5 in November 2016, the ITU and theatre staff were busy doing their handover so Mark walks to one side of Martha's bed and I go to the other. We read out what her monitor says, what drugs she has in her syringe drivers, what her ventilator settings are set to and how much loss is coming from her chest drains. Martha's nurse suddenly notices we're there and apologised, saying she'll be with us as soon as we can - we tell her not to worry because we are fine. We have a quick chat with the surgeon and even exchange a joke with him. The other parents in our bay must have thought we were the coldest and most insensitive parents ever. But this was an environment that we were used to by then; we knew what to expect when we walked in and we knew that the numbers we were seeing were very good for a child fresh out of open heart surgery. Heck...sats at 98% on 30% oxygen was brilliant. We'd seen her struggle to hold her sats on 70% oxygen.
At GOSH Cardiac Intensive Care Unit there are three ward rounds daily; in the morning, late afternoon and the evening one with the night shift team. In the first few days after her operation, we make sure that at least one of us is present for each one. Ward rounds are where any concerns are raised and plans are made for the progression of her recovery. The intensivists, SHO's, the Nurse in Charge and your child's Nurse all recap on her history so far during that admission. We were always actively encouraged to contribute and voice any concerns we may have had. I was fascinated by the way everyone spoke and the language and abbreviations they used. We were lucky that the Nurses we had were very patient with us and would explain anything we hadn't understood. Before long I was speaking like them. After a particularly bad day, we bumped into an SHO called Rian on our way out to get dinner. He asked me how I was, I said that I was feeling better and reeled off the results from Martha's latest blood gas; he half-jokingly handed me a pen and paper and asked me to write his handover notes for the night shift.
But during the early days of recovery, there was very little I could do; the only way I could feel any sense of control was by living and breathing Martha's stats. Whenever we came back to see Martha after a panad break, my first question was always "How has she been while we were away?" and I'd always feel frustrated when the answer was "She's fine". I quickly learned that I had to change the way I asked the question to get the answers I wanted. So then I'd ask "Have you taken her blood gas while I was away?" "What was the lactate?" "How have her Oxygen levels been?" This gave me a way of measuring any changes in Martha, and felt like I knew that she really was "fine".
When your child is an inpatient for any reason, you have practically relinquished any parental rights. You don't decide what treatment they receive, what drugs they have, how often they should have it. You don't even get to decide what, when and how much they eat. Yet you are their parent. You brought them into this world. You would die for them. When Martha was allowed to start formula feeding through an NG Tube, I had to wait for a nurse to be available to set everything up for us. It wasn't until I argued with a Cardiologist about being discharged to our local hospital to establish bottle feeding that he agreed to sign us off for tube feeding Martha ourselves. That's when I began to feel like her Mam. As the tubes and wires came off I found it easier to dress and undress her myself, I actually enjoyed the simple task of changing her nappy because of the first two weeks of her life, I couldn't do it without a Nurse present to hold everything out of the way for me.
We were asked if we would mind having a Polish TV Company interview us and do some filming at Martha's bedside for a show in their country similar to "Children in Need" here. At this point, Martha was ready to leave ICU so we were probably the family in the best position to give a positive interview. We were asked questions in English about the importance of parents being involved in the care of their children in an ICU environment. In Poland - parents had to stick to strict visiting schedules so the aim of the feature was to highlight the benefits of parent involvement to the recovery of the patient. At such a distressing time for a family, I can't imagine what having limited involvement must feel like. For a child like Martha, removed from her parents at barely 5 minutes old and only taken out of an incubator a handful of times for short cuddles, having the time to bond with her was crucial for our relationship and helped me cope with the long days and nights.
If you're Hospital facilitate parent involvement during ward rounds, I encourage you to join in. If not, then we need to question that and see how we can make it happen.
GM
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