Breathing

Well, it turns out that my description of laryngomalacia in the last Blog post was a herring of the red variety. It's all become a little more complicated...

Those of you who are au fait with my Facebook account will know that it's been a rather traumatic week for Arthur, Mr A and I. It all began last Friday night when Arthur's apparent laryngomalacia got a bit scary. He was doing this horrible stridor breathing even when he was at rest, and seemed to be quite distressed by it, sucking in his chest and arching his shoulders with every breath. Grainy video evidence here...

 

I slept him in our bed next to me on Friday night, just to keep an eye on him. On Saturday morning he still seemed pretty bad so I rung the regional out-of-hours service to see if I could get a GP's appointment.

Having answered all the questions fairly positively - "yes, he's conscious", "no, there isn't any blood", "no, he's never stopped breathing" - I thought they were going to remind me that laryngomalacia wasn't dangerous and tell me to stop worrying. However, they decided to send an ambulance, despite me protesting that it really wasn't necessary.

The Paramedics arrived and, after taking one look at Arthur lying on the bed in his nappy, crying and wheezing, instructed me to wrap him in a blanket and bring him down to the ambulance immediately, while Paul packed an overnight bag. We rushed round the ring road with the blue lights at 100mph (or so it felt) and soon arrived back at the good old John Radcliffe where Arthur was taken to the resuscitation room and surrounded by about 10 doctors and nurses while I sat on a chair in the corner muttering about laryngomalacia and how it isn't dangerous.

Having had a nebulizer and some steroids, he still wasn't calming down, so I suggested some milk might chill him out a bit, which of course it did. He was taken next door to the High Dependency unit to be kept an eye on. Some ENT doctors came down and agreed it was probably laryngomalacia which had been aggravated by a cold, a chest infection or croup, and he would just stay on High Dependency while he got over this episode.

But, of course, he didn't get over it. On Tuesday he suddenly took another turn for the worse and the High Dependency nurses called for ENT as an emergency. He was rushed into theatre to be intubated (a procedure where the patient is put under a general anaesthetic while a tube is put down their throat which will breathe for them. When they come round from the anaesthetic they are heavily sedated so they can tolerate the tube). He was transferred to Intensive Care.

While they were in the process of shoving things down the anaesthetised Arthur's throat they also stuck a camera down there to see what was going on. Surprisingly, he doesn't have laryngomalacia at all, but something called 'vocal chord palsy', where something in his brain is putting pressure on the vocal chords and squeezing them together. The surgeon suspected that the cause of this was his Arnold Chiari malformation of the brain and ordered an MRI to investigate.

After a few days of waiting, he had the MRI yesterday and we got the results today. Paul and I were confident that the MRI would show up the Arnold Chiari as the offender and we would be offered something called Chiari Decompression Surgery which is pretty effective in curing this.

However, we were disappointed that it doesn't seem to be the Chiari at all, but a kink in his brain stem which is related to the Chiari but isn't the Chiari itself. He is having a CT scan to confirm this on Monday. The on-call neurosurgeon explained that they would also have a multidisciplinary meeting on Monday to see what could be done, but the likelihood is that they will do nothing as the surgery is deemed too risky if the only effect of the kink is difficult breathing.

So, of course, the question is - if neurology do nothing about the kink, how is young Arthur to breathe? The answer came in the form of an ENT Registrar who explained to us today that, in the circumstance that neurology couldn't or wouldn't do anything, they would consider performing a traciostomy.

While the thought of the poor chap having to manage a tracheostomy as well as catheters and weak ankles doesn't fill me with joy, Paul and I have had a good think about it tonight and we've decided it's far more preferable than serious neurosurgery. Having looked it up online, kids who have tracheostomies for neurological problems often only have them for a few years, so it might only be a temporary thing.

He's been in hospital for a week now, and unconscious for 4 days. As far as we're concerned they can do whatever they want to solve the problem and get Arthur (metaphorically) back on his feet. We just want to get the little chap home really.