ICU Survivors (11/4/12)
This last month we have had more babies on ventilators in ICU than any other month that I, at least, have seen here. This has really stretched Jennifer’s and my ICU skills – neither of us have a ton of training in this area, but have learned by reading, doing, discussing and sometimes just praying for wisdom.
Astoundingly, this has been a month where we have both been surprised by life.
Victoria was born almost at term, but developed tremendous difficulty breathing soon afterwards. It turned out she had a severe pneumonia and blood infection (her white blood cell count, for my medical readers, was 88,000…) and the only way she could breathe at all was for us to put her on a ventilator in ICU. After a few days she was able to breathe on her own, but she still needed a lot of oxygen – for days. Then weeks. In total, for nearly a month.
Finally, this last week, she was finally able to breathe with just room air. When we turned off the oxygen and she was able to keep breathing well, her mum Rachel just smiled. She went home with a daily inhaler as her only medication, and today came for a weight check – she is thriving, feeding like a champion, breathing comfortably, and alive with possibility.
Faith showed up to the surgical clinic for a hydrocephalus check – and had the worst pneumonia I’d ever seen. Sometimes in a child with hydrocephalus, you decide what battles are worth fighting, and when it is just time to let go of a child whose brain is severely injured. The neurosurgeon told me that Faith was one worth fighting for – she is an interactive, alert, smiling little 2 month old whose brain may actually have a chance. Barely breathing when she arrived, we put her on oxygen and checked a lung xray – her whole left lung was either collapsed or filled with infection, her oxygen level not long compatible with life.
So we decided to give her a day or two in ICU on the ventilator to see if she could fight the infection. Two days stretched into 4 – but she’d still open her eyes and try to wiggle the tube out of her throat (several times successfully, requiring us to give her sedative drugs, a stern talking to, and a new ET tube). 4 days stretched into 6, now receiving the highest pressures her little lungs could handle without popping. I sat down with mum to prepare her for the worst, knowing that if she deteriorated at this point, there was nothing more I could do. 6 days turned into 8 – and we noticed that we didn’t need to give her quite so much pressure with each breath. Her left lung started to open up, her oxygen levels started to improve. By day 10, we were able to turn her pressures right down and take her off the ventilator.
Today she is breathing and breast feeding and looking around, ready to fight another day. I am so grateful for this little miracle girl – I lost hope for her so many times in her week in ICU, and am glad to be surprised that a little fighter like her can make it through to the other side – despite our ancient equipment (I had to flick the glass on an analogue dial many times to unstick the needle monitoring her airway pressures…), our inability to monitor blood gas levels and myriad other inadequacies.
Faith and Esther are almost ready to go home, the beneficiaries of the miracles of expensive medications and generous donors, without whom they could not have survived. Mercy, another month-early baby, has also navigated the turbulent waters of surfactant-deficient lungs and mechanical ventilation, and is now home in the arms of her mother.
I am grateful for this last month – I have never been so stretched from a medical standpoint, and have felt like I’m just keeping my head above water in a specialty I’m still trying to learn. I am so grateful for the wisdom of those around me – for Steve, the medical director, who I could ask, “Should I be withdrawing care at this point?”, and who sagely replied, “Let’s just try a couple more days”. For a visiting pediatric anesthetist to give me tips on ventilator management that I didn’t know and probably got Faith through her 2 worst days. For the many donors from all around the world whose contributions to the Needy Children’s Fund allowed Jennifer and I to say to each other – yes, this twin is worth gambling a $700 medication.
Every time we admit a child to ICU, it feels like playing the odds. Looking at our statistics over the last few months, we have had over 50% mortality of the children who have been sick enough to need ICU care (look closely at the notice in the picture of the ventilator above – I think that encapsulates our expectations for ICU patients better than anything else). There is such a heaviness knowing that 50% of the time, the only outcome the parents will receive from this admission is a massive ICU bill. And we have to ask – is it worth it?
This month, for the first time in a while in ICU, it has felt like maybe the benefits can outweigh the risks.