Little Theo: Donate to www.heartlink-glenfield.org.uk.

First of all, everything is postponed until the fungal septicaemia is eliminated. This is expected over the next few days.

The current plan with Theo’s care is to reduce congestion with another septostomy, this time using a stent (to brace the hole open at the optimum size and prevent shrinkage which is what has happened since the first time). Some aspects of this second procedure will be higher risk due to the need to push a stent through a catheter which will travel from his groin upwards into his heart. The hole they made last time was approx 5 millimetres in diameter. .

If this works then hopefully his lungs will dry up some more and he will need less ventilation support. Next hopeful step after that would be the tracheostomy.
http://www.nhsdirect.nhs.uk/articles/article.aspx?ArticleId=371

Sealing the pleural cavity has been on the agenda if the chylothorax is not overcome but the septostomy could help to avoid it so this will be postponed for now.
The description of this procedure sounds quite unpleasant as it requires the surface of the lungs to be aggravated to make them swell and seal the pleural cavity to prevent the chyle fluid from entering and lying there. They can do this by either injecting a sort of sterile talc or antibiotics into the cavity or (worse still) poking a finger in and ‘roughing it up’.

The MRI scan was done this week and revealed pretty much what the consultants had expected. That Theo’s brain is small – exactly as it would be for a neonate who has spent the majority of his life either paralysed or sedated and up to his eyeballs in valium. The basis for doing the MRI was that if Theo had sustained brain damage from the seizures he had when the virus had caused the encephalitis/meningitis, there would have been little point in continuing any therapy. So hurrah for another day!
What we need to do for Theo is try to stimulate him as much as we can with loving cuddles, stroking etc, lots of talking and music. Just what we would try to do at home but with limitations.

So the intention is to keep him stable on a day-to-day basis between the above planned procedures (the septostomy and tracheotomy), which will hopefully take place over the next few weeks.

Generally Theo has been stable but yesterday there was a step backwards. He looked very puffy again around the eyes and neck but there did not seem to be any cause for concern – certainly the consultant was happy with him – but during the afternoon I had him out for a cuddle but he was not happy at all. He kept shifting his head from side to side, would not open his eyes, his hand was batting to and fro and his heart rate and breathing had increased dramatically – which both indicate distress. So after a few disappointing and worrying minutes I asked the nurses to put him back into his cot because I didn’t want to be the cause of his upset. He was also sick a few times and an x-ray showed stomach distention.
Fairly rapidly the decision was made to paralyse him once again and increase his ventilation right back to starting levels. His blood results (taken every hour) were very poor.

Later on we discovered that one of the lines into his foot vein had come loose and so his diuretic medicine had not been getting into his system – nobody knows how long – hence the fluid retention. Also it must have been quite sore having the medicine entering his tissue rather than vein.
This morning he seemed much more relaxed (more morphine, diazepam etc) but his blood and breathing rate had come down and the ventilation is being gradually reduced again.

Learning to focus