Wednesday 31 October 2012

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!

Saturday 20 October 2012

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.


Wednesday 10 October 2012

On Sacrament and Sound Effects

Hello friends!

Arthur has developed a condition called Laryngomalacia, defined by Wikipedia thus -

Laryngomalacia (literally, "soft larynx") is the commonest cause of stridor in infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction.

Essentially what it means is that Arthur now breathes with a very loud wheeze. He does this all the time, apart from when he's feeding, drowsy or asleep. Apparently it doesn't hurt him as it's just his larynx moving as he breathes, but it sounds very much like he's gasping for breath. It's not dangerous, and therefore doctors rarely offer any treatment. It comes on typically between 6 and 8 weeks (Arthur was 7 weeks when it started) and tends to go away by the time the child is 2 years old.

Let's face it, given that he's at high risk of developing both hydrocephalus and kidney damage, you wouldn't have thought harmless noisy breathing would be much of an issue. But it's really getting me down. Laryngomalacia isn't at all related to spina bifida, so I'm inclined to think "hang on, this isn't fair, haven't we got enough to deal with?" but that's just selfish and I know it.
 
The one nice thing (if there is a nice thing...) about spina bifida is that it isn't obvious. This sounds slightly odd coming from me, because I'm not ashamed of his disability, but hear me out... It's been wonderful to just be able to walk round town and for people in shops to say "oh what a lovely baby." And I get into a bit of a conversation with them and don't even have to mention that he's disabled. Now people tend to say "oh dear... is he ok?" and the conversation is completely different.

What  we're really worried about is church.

Last Friday Arthur threw a huge wobbly in church (screaming, not wheezing) and Paul had to take him outside. Having to take a crying baby outside is just one of the realities of taking a baby to church, and it's fine. But Arthur now wheezes for much of the time he is awake and it's very loud - Paul and I sometimes struggle to have a conversation over it. Church is such a difficult one because, ideally, everyone should be able to go to church. After all, we wouldn't ban people with learning difficulties who make spontaneous noises.

But the reality is that people like silence in church. It's about finding peace, and we often like quiet to do that. A child who screams and is swiftly taken out by a parent is one thing. A child who wheezes loudly with every in-breath is another. And even if people say they don't mind, it stresses me out. that he's being so disruptive

I'm not sure if I'm going to take him to College Eucharist tonight or leave him here with Paul. Depends if he's asleep I suppose.

Tuesday 2 October 2012

Morning has Broken

It's 6am and I'm blogging. Yup...

His Lordship has lately decided that 5.30am is the time he'd like his breakfast (Arthur, not Paul.) Admittedly it beats 3am or 4am, but at this time of morning there's really no point in going back to bed before morning prayer, so I'm having half-an-hour of computer time and am spending it writing a blog.

So, term has started again, although you'd never know it from my - ahem - busy schedule. I have decided not to do any optional lectures this year,as I think it's probably far more important I spend time with Arthur in these formative months than sit in lots of lectures. Therefore, my schedule consists of a half-hour preaching workshop on a Monday and an hour-and-a-half placement presentation on a Friday. Plus an hour of College Group on a Wednesday and morning/evening prayer.

Actually, it's really nice to have a little bit of a routine (morning/evening prayer and meals) but enough to be manageable. It feels like everything has fallen into routine of late, including Arthur's care.

The catheters have continued to be extremely stressful, and I admit I've had quite a few down days thinking about them. The thing is, getting them wrong and allowing large amounts to build up in the bladder is extremely dangerous - kidney failure is the biggest killer of spina bifida children, or so I'm told - so every time we have a big reading I throw a bit of a wobbly. But I think we've got it cracked now, as we've worked out that if we cath him immediately before a feed and again precisely 1 hour after the feed the volumes stay below 50ml. We'd prefer 40ml, but 50ml is ok.

We've also recently acquired some new overnight catheters which are hideously complicated and involve snapping a glass vial and injecting purified water into a balloon which expands in the bladder. Complicated, but at least they stay in overnight and don't fall out like the old ones did.

I'm feeling weirdly guilty about how much we're costing the NHS. His catheters alone cost £15 per day (£5,475 per year). Of course he's worth it, it just feels odd being so reliant. Paul reminds me that the British taxpayer is probably more worried about their money supporting chain-smokers with lung problems than they are with supporting a little baby with needs. I think I'll just try not to think about it.

Other concerns include feeding (have switched to formula due to catheter 'what goes in must come out' scenario, which is guilt-inducing but has made me more sane), a dramatic wheeze and a lazy eye. All in a day's work...

Still, on the good side, Arthur is now tracking objects with his eyes and smiling at Mummy, Daddy and his Red Cow (yay!) so developmentally he's spot on. It's so wonderful to see him responding to stuff.

Today I've really got to start reading for my dissertation. I handed in my African essay on Friday, so starting the dissertation proposal is top priority. I loved writing my undergrad dissertation - it's great to be able to really get into a subject - so I'm looking forward to starting this one. I also have to meet with my tutor and agree how many evening prayers a week I'll be able to attend. Late afternoon is Arthur's scrotty time, so hopefully I won't be expected to go to all of them. I'd feel a bit bad about letting Paul cope with the screaming every single day.

Well, it's probably time for me to get myself into some sort of presentable state for morning prayer. Having consumed his breakfast his Lordship is, of course, asleep again. Hard life being a baby...