Zach is out of intensive care!!!!!

After 34 days Zach has finally made it off the ventilator and out of the paediatric intensive care unit. It has been a long slog, but we are glad to be on the high dependency unit. It is a well needed change of scenery and a big step down. Now Zach has to share a nurse with another patient, and we get to step in and start taking up some of the responsibility for his care. The constant noise of machines and the horrendous atmosphere are a distant memory now.  As he has been sedated for such a long time with strong drugs, (morphine for pain relief and sedation, midazolam for sedation, rocoronium as a paralysing drug during invasive ventilation, fentanyl to replace morphine as it’s stronger and is used for sedation, clonidine which helps with withdrawal and is used as sedation), Zach has to be weaned slowly to stop him going cold turkey. He does suffer a little with withdrawal, he sweats at times, is irritable, and his sleep pattern is completely shot to pieces. He spends quite a lot of time just staring, but does follow you if you step into his line of sight. It’s just a matter of time before they can wean him safely and he returns to his normal smiley self. The doctors are sure that he doesn’t have brain damage as a result of the ventilation, Zach has had an MRI scan and the Neuro radiologist couldn’t find any evidence of brain damage and it showed that the tumour in his brain had shrunk slightly again. He will be receiving some chemotherapy this week, but it will only be the chemo that is injected via his Omaya reservoir in his head as it isn’t toxic to the rest of his body. The rest of his therapy is still a bit up in the air at the minute. Ira Dunkel who is an Oncologist in the states, gave our professor Zach’s original chemotherapy protocol. He is now helping to work out where to go next. Zach will receive some systemic chemotherapy but the amount is still to be decided and will be very much guided by Zach’s state of health. They are sure that Zach was just unfortunate to get a bug whilst he was immuno-supressed, but none of us want to end up back in intensive care if we can help it. To gauge how much ventilation a patient is on; doctors use a system called the “oxygen index”. A normally ventilated person should be between 10 and 20, with a threshold index of 40. That is the point when doctors get nervous. Zach’s oxygen index at his worst was 70, which gives you an idea of the severity of the disease in his lungs and the aggressiveness of the ventilation he needed to get gaseous exchange to happen. Today as I am writing this he has a nasal prongs on which delivers about 0.5l/min of oxygen with no pressure. He did have a full face mask which allowed him to stay on a ventilator without a tube being inserted into his windpipe. The doctors could give him pressurised oxygen enriched air, and he didn’t like it being removed as he was still dependent on the pressure to help his breathing, but on Saturday all that changed. We took off his mask at about 1030 to give his face a wipe and stop him getting sores. He didn’t panic in the slightest, so it was decided to keep it off and instead waft oxygen across his nose and mouth and it worked. Four hours later he was moved along with a mountain of drugs to the high dependency unit, which is only next door. It is a very different beast. We have our own bay, privacy, no more beeping machines. We can have a cup of tea by his bed. We have a TV in his bay so we can relax with him. There is more of a day and night routine, not that Zach is interested in that yet so will no doubt take him a few days to get back into the swing of things. We can’t sleep on the ward with him but we are welcome any time of the day or night. We will have to try to rest as much as we can as once Zach is feeling better he won’t want to be lying in bed all day!

The blog is becoming ever more popular. It has had over 9500 views since we started it. It is viewed in America, Canada, Afghanistan, Switzerland, Germany, Cyprus, Norway, Australia, Denmark, Spain and even Aberdeenshire.  We would also like to thank you all for your thoughts and prayers over this dreadful time. They have all helped in some way as Zach is now known as the “Christmas Miracle” in the intensive care unit.

Keep reading and we will speak to you again soon.