Intensive Care

Day 19 in the John Radcliffe hospital...

Well, here's a brief chronological summary of developments since my last post.

22/10 - Arthur's Consultant Neurosurgeon overrules his colleague's assessment that the vocal chord palsy is being caused by a kink in the brain stem and cancels the CT scan. He also doubts the Arnold Chiari malformation is anything to do with it. Neurology's conclusions are summed up - "it's probably neurological, but we're big enough to admit we don't know what's causing it." Intensive Care extubate (take the tube out of) Arthur and he just starts wheezing again so they put him back on the breathing machine.

23/10 - ENT schedule a tracheotomy for 25/10 and send down their respiratory nurse to talk us through it. We discover that managing a trachy involves changing the trachy straps daily, changing the tube itself weekly, and clearing the tube using a pump several times daily, often several times an hour. Intensive Care take Arthur off the breathing machine but keep the tube in to ensure his airway is clear and drop the sedation, and he manages perfectly. This is pretty much what a trachy will be like, apart from the tube is entering through his nose rather than his neck.

24/10 - With the Trachy scheduled for tomorrow, Neurology suddenly re-enter and announce that there's a small chance the problem may be caused by Arthur's borderline hydrocephalus, and ask us if we would like them to try putting in a shunt (a tube in his head which drains off excess fluid). We mull over this - a shunt is non-reversible but is a smaller operation than a trachy and should (in theory) just sit there without needing any day-to-day management. We know that shunts can get blocked or infected and fail, but we decide it is worth a go. Neurology announce they can do it today, so Arthur is prepared for theatre. An hour before the operation is scheduled it is discovered he has an infection, so surgery is postponed until 29/10.

25/10-28/10 - We wait. Arthur is no longer under sedation and is normal, apart from he has a tube in his nose. If anything, he is happier than normal, as he can breathe!

29/10 - Arthur has his shunt operation. He is in theatre for just over an hour and returns with an inch-long c-shape wound at the back-right of his head, and another wound on his stomach. There is a lump behind his right ear where the valve is sitting. He is drowsy, but awake.

30/10-31/10 - We wait again... Arthur is awake and slightly grumpy, possibly he is in a bit of pain from the surgery. He bestows smiles on the Urology team who are monitoring his catheters while he is in hospital. By 48 hours after the surgery his head is half a centimetre smaller and feels a different shape. His lazy eye is gone, and he can already track moving objects better. He is sleeping with his eyes fully closed for the first time in his life. He will be extubated again on 5/11 to see if the shunt has improved his breathing. We are hopeful, but realistic that the chances are that it won't and he will need a trachy.

So that's about it. Paul and I are exhausted and spending far too much money on diesel and hospital food, but are pretty relaxed about the whole thing. I'd always imagined intensive care units would be dark, tense places with earnest medical staff moving silently between patients hanging between life and death. Perhaps an adult unit is a bit more like this, but the paediatric unit at the JR is an absolutely smashing place. The nurses are incredible and exchange friendly banter all day. The other parents are generally fantastic and we've made a few friends, including a couple whose son is 2-and-a-half weeks older than Arthur and has been in hospital all his life. Despite having lived in the hospital for 16 weeks, they are unfeasibly chilled out - an inspiration.

I am so, so lucky to be here at Cuddesdon. Martyn (the Principal) has visited us several times since Arthur has been in hospital. Morning and Evening prayer have been a write-off, but no-one has put pressure on me to do anything I can't do. I've managed to attend most of my lectures - I'm lucky to have Paul around to take his share of the hospital duties. The people at my placement, Benson, have also been tremendous, especially my placement supervisor John.

A few people have asked us when Arthur's likely to come home. The truth is, we don't know. If, when he's extubated on Monday, they find that the shunt has somehow cured his vocal chord palsy (unlikely, but possible) they'll probably keep an eye on him for a few days, and if things are good he could be home at the end of next week. If (more likely) there is little or no change he will be scheduled for the trachy, probably next Thursday 8th November. If all goes well and there are no infections or complications he will stay in hospital for 2 weeks after the trachy, so will be coming home on 22nd November. But we've learnt not to hang on definites, so we're assuming he's in for the long haul, and if he's out earlier, that's great!