News from Theo's consultant

Today we had a lengthy discussion with Theo's consultant intensivist, Dr Duthie, which was both positive and negative.

Since he was admitted to Paediatric ICU, we have known of the three possible scenarios for cardiomyopathy patients like Theo.

A third of patients die.
A third of patients' hearts remain the same and require constant medication to survive.
A third experience recovery of heart tissue and improve, some completely.

We feared the worst this morning as we approached the hospital but have been pleasantly relieved for now.
Our understanding has been that as his heart has not improved he was in the first, most disappointing category. However, improvements have been seen in the last month; he no longer requires 'inotropic' medication to support the heart, and in the last few days the chest drainage in particular.

This is not to say his condition cannot become worse again but there are three main things to consider.

1) His vulnerability to infection is the current main concern. He has had a fungal infection already which has reappeared within the last 24 hours. He is also becoming more susceptible to infection due to the number of entry points from wires etc and the intravenous nutrition. There is concern that his natural defences are already depleted therefore treating infection may become more difficult to control. In his current vulnerable state an infection could be fatal rather than his heart failure. Being in Intensive care means that every few hours blood samples are taken and cultures grown to that there is no delay in diagnosing an problem and treating it - this reactivity protects him somewhat.

2)Ventilation - his reaction to weaning the breathing support this last week commenced well. Unfortunately it has ultimately proved too much hard work for his tiny little lungs and the support has been fully reinstated at levels similar to when he was admitted. This will need to be a medium to long term action, done slowly.

3) His heart function - this is neither deteriorating nor improving but is stable and controllable. (Please re-read about dilated cardiomyopathy).

Therefore, we're feeling a little more confident about his chances of survival and have everything crossed in the hope that an infection doesn't take him in the mean time.

Long term ventilation is best managed with a tracheostomy, so this will happen in the next few weeks. The doctors also aim to replace his various tubes etc with oral doses of medication.
The tentative expectation is that his cardiac condition will be sufficiently managed at Glenfield so that he can ultimately be transferred to the intensive care unit at the Leicester Royal Infirmary where they specialise in respiratory care. If all goes well, it would be here where they could change his ventilation equipment to something more mobile. Myself & Willow would then be trained in his day-to-day care(!) over a period of weeks/months (depending upon competence!) to operate ventilator / administer drugs, etc. Ultimately, we could bring him home with the help of local support services, etc. This brings its own set of fears and concerns but we are obviously more than willing to deal with them.

In the long term, as he grows bigger, his respiratory function could get better and the ventilation may change depending on any improvement. There is nothing that can be done to mend his heart but apparently babies heart cells can generate until about nine months of age and so we have to hope that in the next eight months some regeneration might take place.

The only other option that could be considered is a heart transplant if his condition remains that same. Considering the risks and the availability of suitable donors, it would be dependent upon his predicted quality of life. This would not really be a possibility until he reached around 9 months or 9kg in weight.

So given that we went to this meeting dreading that this may be the point at which we began to be prepared for the worse possible choice,to withdraw care and allow him to die peacefully, we are rather pleased - Incredibly pleased but trying to remain realistic all the same. We feel we can begin to hope for a future with Theo, something we've tried so hard not to do for fear of worse outcomes.

Colin