I have a small problem this term, it is this. I have quite a lot of lectures and college commitments. I also have a small baby who sleeps from 7pm to 7am, for which I am eternally grateful. I am also eternally grateful for hardworking husband who looks after small baby while I am in lectures and daily offices, as well as doing all the washing, cleaning, shopping, washing up and most of the cooking. So far, so good. Even so, I cannot seem to find time to settle down to work (by which I mean a sustained period of quiet work on essay, dissertation or sermons) until after dinner at around 8pm, by which time I am far too tired to work. To do any significant work in the day would be to sacrifice valuable never-to-be-gotten-back time with small baby, and my maternal instincts just won't let me do that. If he's in the flat and I'm in the flat, I want to be hanging out with him!
Hmm... The dissertation will suffer, but does that really matter? I want to be a Priest, not an academic. But I do also quite like getting a job done well. Nursery is surely the answer next year, when I have to do actual proper work, but until then...
Anyway, I digress, I was going to write about clerical wear.
So, we've got the so-called 'tack fayre' in a couple of weeks, and my mind returns to what, exactly, I think of the clerical uniform I am required by Canon Law to attire myself with from June.
I am approaching it with some trepidation. The first question is, when will I wear it? There are some clerics who wear their collar all the time, no matter what they are doing, some who will only wear it when they are doing 'official' church work, and some in particular traditions of the church who barely wear it at all. For me, it's a given that I'll wear it whenever I'm doing my actual, diarised church stuff. But what of the school run or the trip to Tesco? What about when I go and see friends? I've had a good old think and my broad opinion is that if I'm doing stuff around the parish, any stuff, I should aim to 'be seen' which means wearing the collar. I'm sure a trip to Tesco will be an interesting experience, but it's too good an opportunity to miss. A female 20-something vicar battling with a toddler in a buggy in a public place is probably an image that will stick in people's minds, and hopefully in a sort-of good way. I won't, however, be wearing it on meals out with University friends or in the bath, you'll all be pleased to know.
The second question is - what? Google clerical wear for women and the choice is bleak. There are plenty of clerical shirts avaliable, and with some careful hunting I'm sure I'll find one which is nicely cut (i.e. not for a man!) but a friend and I spent a full hour last week trying to find something like a tunic with a clerical collar, which might be worn over leggings for a casual look, and only found a designer in Sweden at a cost of £100 per item.
It may sound vain to be concerned about 'casual looks' and 'shirts being cut well' - but ultimately it's a concern to preserve my own identity as well as entering into the sacrament of ordination and the changes it will bring to my life and the life of my family with the utmost seriousness.
Then there's stoles to buy, and other assorted garb. Fortunately I get a grant from the Diocese to cover most of this. Also, I'm so green to Anglicanism, having been not-an-Anglican for 83% of my life, that my lack of opinions might prove a bonus. I've no idea which traditions certain colours of shirt or styles of collar or stole are associated with, so I'll probably just choose what I like the look of!
That's probably all I've got to say on the matter. Oh now here's some good news - I got my official offer of a Title Post a couple of days ago, and have already written back to accept. So, all being good and well I'll be able to make it so-called 'Facebook official' in not too long. I am so, so excited about my Curacy. But I'm also excited about my final 4 months or so at college. 4 months to prepare for ordination!
Eeek!
Thursday, 7 February 2013
Thursday, 17 January 2013
Milk and Solid Food
"I fed you with milk, not solid food, for you were not
ready for solid food. Even now you are still not ready". 1 Corinthians 3:2
Oh St Paul you do crack me up. This week, what is occupying my brain can be broken down as follows:1.24% - I wonder if overt evangelism is necessary for mission?
2.77% - I wonder what the Body of Christ would look like if it truly acknowledged itself as broken?
10.48% - What shall I have for tea tonight?
85.51% - What should Arthur have for tea tonight?
As I sit in Morning Prayer I try and push all these thoughts out of my mind and focus on what I'm meant to be focusing on. And then the Lectionary comes up with this little gem.
Given his opinion on marriage, I'm assuming St Paul never actually weaned a baby. He is therefore to be applauded for getting so succinctly to the root of the weaning problem - WHAT oh WHAT are you ready for?
You see, the question 'What should Arthur have for tea tonight?' is simply the headline. There are a vast, vast number of secondary questions including, but not restricted to...
Should I make my own puree or should I buy it? Was spending £12 on an electric blender a sensible purchase? How many spoonfuls of food can I feed him? Does flapping arms/crying between each mouthful/saying "ah-boo!" in a loud and enthusiastic tone mean he likes it or not? When do I start to give him less milk, and how much less? Can a baby live by butternut squash alone? What of meat and dairy products? Would he like a drink of water with his meal? Am I a bad parent if small child is not offered a range of imaginative, homemade, organic meals? How long does asparagus keep? Is his nappy meant to be that colour? Does it matter if lunch and dinner are at a different time every day? How on earth does a baby learn to use a sippy cup? Can I puree a Tesco value horseburger?
These and many other questions spin round my head as I'm trying to concentrate on what I'm meant to be concentrating on. Dissertations and experiential projects and the whole thorny issue of my ordination in just over five months.
Oh, to go back to just feeding him milk! Those were the days weren't they? Ok, me and Mr A were obsessing over fluid intake and catheter frequency/volumes but once I'd got past the sad fact that the neuropathic bladder meant unlimited breast milk was off the agenda, at least there was no choice of meal. "A bottle of milk, sir?" "Don't mind if I do..."
Possibly I've unwittingly stumbled into a theological reflection, or possibly not (I'm still not entirely sure what theological reflection is). Probably what St Paul is trying to say is that introducing solid food to a 5-month-old is flippin' impossible. Well, what he's actually saying is that grasping the message of the gospel when you're engrossed in worldly things is flippin' impossible, but I decided to take the former reading this morning.
But we press on, Mr A and I. And while, to use the language of St Paul, the 'worldly' thing to do might be to slip quietly back to milk (or give him butternut squash for every solid meal. He loves butternut squash) we will press boldly on, with a spoon in one hand and, in the other, a world of exciting liquified flavours just waiting to be discovered. Arthur, we're in this for the long run. And even though you insist on weeping through mouthfuls of lovingly-home-pureed carrot and swede two days running, we will not be disheartened, oh no. The remaining swede has been frozen, to reappear at a time of our choosing. A time which you do not know. A time which not even Mr A knows. Only Mummy knows. But the swede will come back. Oh yes, Arthur, it will come back.
Swede. Carrot. Ordination. The future's bright. The future's orange.
Monday, 31 December 2012
Dear Arthur
Dear Arthur,
If I'm honest, I'm a bit jealous you were born in 2012. I mean, since when has a year been so eagerly anticipated? And what year is going to go down in history like this one? Even when you're an old man, mention "twenty twelve" to anyone, and they'll know what happened then. At least I like to think they will.
And, what's more, being born during those Summer weeks. It's really quite special.
2012. The year of the London Olympics and Paralmpics. But as the next generation lit those 204 petals on the night of Friday 27th July, we were awaiting a quite different next generation.
By the time of Team GB's first medal on July 29th, although we did not know it, you were on your way (and Daddy was on his way to London!) It was a time for pride, for patriotism, for sheer celebration of life.
But Monday 30th July 2012 at 3.10am stands out for me, although all Olympians would surely have been tucked up in bed.
2012. The Queen's Diamond Jubilee. And next year that family will celebrate a whole new generation. Around the time of year you were born, it would seem.
2012. The year the world lost some great people: Neil Armstrong. Clive Dunn. Patrick Moore. But were many great people born in 2012? We're yet to see. Will you be one of them? That's up to you.
It hasn't been an easy year. A year which started with me, 8 weeks pregnant, in bed and asleep on the stroke of Big Ben. I knew it would be a year of great highs. But I couldn't imagine the lows. March 15th and June 29th were to be the deepest of these. Not to mention the sea of uncertainty between October 13th and November 12th.
But I couldn't have imagined the highs either. No new parent can. That amazing journey of learning and loving in a relationship with a new person. Those first smiles. Seeing that personality develop.
What does 2013 hold? Funnily enough, those dark dates of March 15th and June 29th are already filled in on the calender. On March 15th we will be heading off to a weekend to spend time with other families of babies and toddlers with spina bifida at a Shine Charity weekend away. I've no doubt it will be a weekend of fun and laughter. It shows how far we've come. On June 29th I have the privilege of being bridesmaid at the wedding of Jen, a dear friend, your godmother. It will also be the eve of my ordination, taking all our lives in a whole new direction.
Anyway, sorry for the sickliness and the cliches. At least I didn't mention that 2012 was the year the Snowman and the Snowdog came out, otherwise I'd be whimpering. Oh, I just mentioned it.
Well, Happy New Year Arthur. Wishing you a happy and healthy 2013.
Mummy xxx
If I'm honest, I'm a bit jealous you were born in 2012. I mean, since when has a year been so eagerly anticipated? And what year is going to go down in history like this one? Even when you're an old man, mention "twenty twelve" to anyone, and they'll know what happened then. At least I like to think they will.And, what's more, being born during those Summer weeks. It's really quite special.
2012. The year of the London Olympics and Paralmpics. But as the next generation lit those 204 petals on the night of Friday 27th July, we were awaiting a quite different next generation.
By the time of Team GB's first medal on July 29th, although we did not know it, you were on your way (and Daddy was on his way to London!) It was a time for pride, for patriotism, for sheer celebration of life.But Monday 30th July 2012 at 3.10am stands out for me, although all Olympians would surely have been tucked up in bed.
2012. The Queen's Diamond Jubilee. And next year that family will celebrate a whole new generation. Around the time of year you were born, it would seem.2012. The year the world lost some great people: Neil Armstrong. Clive Dunn. Patrick Moore. But were many great people born in 2012? We're yet to see. Will you be one of them? That's up to you.
It hasn't been an easy year. A year which started with me, 8 weeks pregnant, in bed and asleep on the stroke of Big Ben. I knew it would be a year of great highs. But I couldn't imagine the lows. March 15th and June 29th were to be the deepest of these. Not to mention the sea of uncertainty between October 13th and November 12th. 
But I couldn't have imagined the highs either. No new parent can. That amazing journey of learning and loving in a relationship with a new person. Those first smiles. Seeing that personality develop.
What does 2013 hold? Funnily enough, those dark dates of March 15th and June 29th are already filled in on the calender. On March 15th we will be heading off to a weekend to spend time with other families of babies and toddlers with spina bifida at a Shine Charity weekend away. I've no doubt it will be a weekend of fun and laughter. It shows how far we've come. On June 29th I have the privilege of being bridesmaid at the wedding of Jen, a dear friend, your godmother. It will also be the eve of my ordination, taking all our lives in a whole new direction.Anyway, sorry for the sickliness and the cliches. At least I didn't mention that 2012 was the year the Snowman and the Snowdog came out, otherwise I'd be whimpering. Oh, I just mentioned it.
Well, Happy New Year Arthur. Wishing you a happy and healthy 2013.
Mummy xxx
Friday, 21 December 2012
10 Reasons why I am not the Archbishop of Canterbury
I haven't blogged for absolutely ages. Not since THAT VOTE actually. It seems silly to dedicate an entire blog post to it, with nearly a month gone by. I've got various things I ought to write about, but rather than make them a collection of unrelated paragraphs I think I'll structure them around a tenuous framework.
10 reasons why I am not the Archbishop of Canterbury
1) I am of the female gender. Fortunately, I have no career aspirations in this direction (and I'm not just saying that in the "I couldn't possibly ever be a Bishop, but if God ever wanted me to how could I argue with God?" mock-humble way. See the final episode of series two of Rev!) That level of management and politics would bore me, and I couldn't imagine not being directly involved with a specific worshipping community. So when I approach the Woman Bishop issue, I approach it as would anyone, male or female, clergy or lay, who wants to see equality in their church. If we lack people of both genders, as well as all races, ages and sexualities, throughout our church, we lose some reflection of the Kingdom. That's my opinion. Nothing more, nothing less.
2) I only pretend to be an Academic. I was jolly pleased a couple of weeks ago to get a higher-than-expected mark in my most recent MTh essay, but I'm well aware that I'm a master of jumping-through-hoops rather than a master of theology! I'm also entirely realistic that my next essay marks won't be nearly so high because...
3) I don't seem to have any time! Archbishop Rowan manages to be an Archbishop, an academic and write quite good poetry. It's all I can do to look after a baby 50% of the time while keeping myself and Mr A fed. Not to mention the never-ending battle to leave the house in mostly clean clothes that mostly do not have traces of baby bodily fluids on them.
4) Actually, having said that, my eyebrow care is better than the average Archbishop.
5) I'm still working out what I think about, well, everything. Two weekends ago we had Arthur baptised. This came at the end of a themed study week on Liturgy, including most of a day on Baptism. As I mulled over, academically, what I was to put my small son through at the end of the week, especially the sacramental aspects, I realised that many of the reasons I was doing it might easily be termed 'folk religion'. A major reason was to make a public commitment to bring Arthur up in the knowledge and love of God. So far, so good. But a huge aspect was simply because, well, we're over the moon he's here with us - I don't think this can be found anywhere in baptism theology!
6) Talking of, Arthur had a really superb Paediatrician's appointment a couple of weeks ago. Of particular interest, she could see nothing wrong with the reflexes in his legs and feet. A little brisk, perhaps, which could mean stiff legs, but to me this sounds better than floppy legs. She also recommended he goes onto solids, which he's been really enjoying. She complimented his alertness and good tracking eye movements. This came off the back of a perfect kidney scan, and a urodynamic assessment which Arthur became the first baby in the memory of our very experienced urology nurse to sleep through! With all that has happened this year, it's lovely to come to the end of the year on such a high. (I'm aware this has nothing to do with me not being the Archbishop, so it looks like the framework is crumbling already...)
7) I'm about to be appointed to a Title Post, but it isn't the Archbishop. That's Julian Welby. Still having to be schtum about where I'm going.
8) I've never been to Canterbury. Looks nice though.
9) I am just toooo excited by Christmas I would hardly be able to maintain the decorum required of an Archbishop! Honestly, first Christmas with a baby is going to be GREAT!
10) Insert reason 10 here. Happy Christmas!
10 reasons why I am not the Archbishop of Canterbury
1) I am of the female gender. Fortunately, I have no career aspirations in this direction (and I'm not just saying that in the "I couldn't possibly ever be a Bishop, but if God ever wanted me to how could I argue with God?" mock-humble way. See the final episode of series two of Rev!) That level of management and politics would bore me, and I couldn't imagine not being directly involved with a specific worshipping community. So when I approach the Woman Bishop issue, I approach it as would anyone, male or female, clergy or lay, who wants to see equality in their church. If we lack people of both genders, as well as all races, ages and sexualities, throughout our church, we lose some reflection of the Kingdom. That's my opinion. Nothing more, nothing less.
2) I only pretend to be an Academic. I was jolly pleased a couple of weeks ago to get a higher-than-expected mark in my most recent MTh essay, but I'm well aware that I'm a master of jumping-through-hoops rather than a master of theology! I'm also entirely realistic that my next essay marks won't be nearly so high because...
3) I don't seem to have any time! Archbishop Rowan manages to be an Archbishop, an academic and write quite good poetry. It's all I can do to look after a baby 50% of the time while keeping myself and Mr A fed. Not to mention the never-ending battle to leave the house in mostly clean clothes that mostly do not have traces of baby bodily fluids on them.
4) Actually, having said that, my eyebrow care is better than the average Archbishop.
5) I'm still working out what I think about, well, everything. Two weekends ago we had Arthur baptised. This came at the end of a themed study week on Liturgy, including most of a day on Baptism. As I mulled over, academically, what I was to put my small son through at the end of the week, especially the sacramental aspects, I realised that many of the reasons I was doing it might easily be termed 'folk religion'. A major reason was to make a public commitment to bring Arthur up in the knowledge and love of God. So far, so good. But a huge aspect was simply because, well, we're over the moon he's here with us - I don't think this can be found anywhere in baptism theology!
6) Talking of, Arthur had a really superb Paediatrician's appointment a couple of weeks ago. Of particular interest, she could see nothing wrong with the reflexes in his legs and feet. A little brisk, perhaps, which could mean stiff legs, but to me this sounds better than floppy legs. She also recommended he goes onto solids, which he's been really enjoying. She complimented his alertness and good tracking eye movements. This came off the back of a perfect kidney scan, and a urodynamic assessment which Arthur became the first baby in the memory of our very experienced urology nurse to sleep through! With all that has happened this year, it's lovely to come to the end of the year on such a high. (I'm aware this has nothing to do with me not being the Archbishop, so it looks like the framework is crumbling already...)
7) I'm about to be appointed to a Title Post, but it isn't the Archbishop. That's Julian Welby. Still having to be schtum about where I'm going.
8) I've never been to Canterbury. Looks nice though.
9) I am just toooo excited by Christmas I would hardly be able to maintain the decorum required of an Archbishop! Honestly, first Christmas with a baby is going to be GREAT!
10) Insert reason 10 here. Happy Christmas!
Sunday, 18 November 2012
Tales of the Unexpected
Arthur is out of hospital and does not have a trachy!
This is something I simply wouldn't have believed possible as I wrote my last blog post. As planned, the breathing tube was taken out on Monday 5th November and, as expected, he started wheezing again. The trachy was immediately scheduled for Thursday 8th November, and the medical staff told us their priority was just keeping him going without a tube until the trachy took place. And then... he just started getting better.
What do I think about miracles? I'm not sure. I think I've mentioned before that I've often felt awkward about the idea that healing happens for some people and not others, or happens more for people who are being prayed for. But, to me, Arthur's whole journey throughout hospital and out the other end has been a miracle. All the decisions that have been made, the treatment he has received, the treatment that has been withheld. It's been a complex tangle of strands which have somehow led to Arthur coming out of hospital on Monday with a fully operating shunt which has healed so quickly, no trachy, and a wheeze which is a tenth of what it was and improving every day. Arthur's feeding and catheter regime, which Paul and I have been concerned about since his birth, have also been reviewed since he went in, and we're now on a much less demanding regime (catheters every 2-and-a-half, rather than 1-and-a-half hours) which is wonderful.
It has been so, so unexpected. In the time he has been in hospital we have seen glimpses of God in other places too. We've found he has been added to prayer lists at churches and theological colleges far and wide, by people we do not know. Friends old and new have been praying. People have been generous in helping us out. We received some anonymous money through the door which paid for a tank of much needed fuel, and another donation from my childhood church. I've messages mounted up in my Facebook inbox which have brought tears to my eyes (and I really must reply to...) Times like these bring out the very best in people, and we are so fortunate to be in the place we are with the friends we have. I've mentioned previously what a profound influence our time in hospital has had on both Paul and I, and that will stay with us our whole lives.
It has been so, so unexpected.
From one unexpected thing to another. Arthur's illness has brought about a rather interesting quandary: is the curacy which we have been exploring, and provisionally accepted (but not yet signed on the dotted line) going to be practical for us? If a similar situation happened this time next year, and we were in Devon, what would happen? Well, I'd have made that phone call that Saturday morning, the ambulance would have taken us to either Derriford or the Royal Devon and Exeter hospital, and as soon as it emerged that he needed to be in a Paediatric Critical Care unit, with Neurosurgeons on hand, he would have been transferred to Bristol Children's Hospital, over 2 hours from our proposed Curacy.
I mentioned this to one of my tutors a couple of weeks ago, as well as the fact that our families are nearer to Bristol, and she said "well, why not explore other options?" Within 3 days I had been released by the Exeter Diocese and transferred to Bath and Wells. Exeter kindly agreed to keep the seaside Curacy I wrote about open, should there be nothing suitable in Bath and Wells. It all felt so good. And then Bath and Wells sent me a Parish Profile for a Curacy.
Geographically, it was great. But it wasn't the ministry I was expecting - it was an Urban Prioriy Area, and an area has a reputation for having high crime and multiple deprivation. It looked exciting, missionally, but not a good place to live. I asked Bath and Wells if they had anything else, but they said I had to go and look at this one first. So we went yesterday, just to show willing, just to jump through a hoop that might get us to the right curacy.
And, unexpectedly, it was perfect. A lovely incumbent, a warm congregation, a community who really didn't seem to be entirely what their reputation stated, exciting things happening missionally, some very nice countryside nearby. Paul and I agreed that this was the first curacy we have looked at (and, of course, it is the third place we have visited) where we have felt a very genuine and profound sense of calling.
Completely unexpectedly.
This is something I simply wouldn't have believed possible as I wrote my last blog post. As planned, the breathing tube was taken out on Monday 5th November and, as expected, he started wheezing again. The trachy was immediately scheduled for Thursday 8th November, and the medical staff told us their priority was just keeping him going without a tube until the trachy took place. And then... he just started getting better.
What do I think about miracles? I'm not sure. I think I've mentioned before that I've often felt awkward about the idea that healing happens for some people and not others, or happens more for people who are being prayed for. But, to me, Arthur's whole journey throughout hospital and out the other end has been a miracle. All the decisions that have been made, the treatment he has received, the treatment that has been withheld. It's been a complex tangle of strands which have somehow led to Arthur coming out of hospital on Monday with a fully operating shunt which has healed so quickly, no trachy, and a wheeze which is a tenth of what it was and improving every day. Arthur's feeding and catheter regime, which Paul and I have been concerned about since his birth, have also been reviewed since he went in, and we're now on a much less demanding regime (catheters every 2-and-a-half, rather than 1-and-a-half hours) which is wonderful.
It has been so, so unexpected. In the time he has been in hospital we have seen glimpses of God in other places too. We've found he has been added to prayer lists at churches and theological colleges far and wide, by people we do not know. Friends old and new have been praying. People have been generous in helping us out. We received some anonymous money through the door which paid for a tank of much needed fuel, and another donation from my childhood church. I've messages mounted up in my Facebook inbox which have brought tears to my eyes (and I really must reply to...) Times like these bring out the very best in people, and we are so fortunate to be in the place we are with the friends we have. I've mentioned previously what a profound influence our time in hospital has had on both Paul and I, and that will stay with us our whole lives.
It has been so, so unexpected.
From one unexpected thing to another. Arthur's illness has brought about a rather interesting quandary: is the curacy which we have been exploring, and provisionally accepted (but not yet signed on the dotted line) going to be practical for us? If a similar situation happened this time next year, and we were in Devon, what would happen? Well, I'd have made that phone call that Saturday morning, the ambulance would have taken us to either Derriford or the Royal Devon and Exeter hospital, and as soon as it emerged that he needed to be in a Paediatric Critical Care unit, with Neurosurgeons on hand, he would have been transferred to Bristol Children's Hospital, over 2 hours from our proposed Curacy.
I mentioned this to one of my tutors a couple of weeks ago, as well as the fact that our families are nearer to Bristol, and she said "well, why not explore other options?" Within 3 days I had been released by the Exeter Diocese and transferred to Bath and Wells. Exeter kindly agreed to keep the seaside Curacy I wrote about open, should there be nothing suitable in Bath and Wells. It all felt so good. And then Bath and Wells sent me a Parish Profile for a Curacy.
Geographically, it was great. But it wasn't the ministry I was expecting - it was an Urban Prioriy Area, and an area has a reputation for having high crime and multiple deprivation. It looked exciting, missionally, but not a good place to live. I asked Bath and Wells if they had anything else, but they said I had to go and look at this one first. So we went yesterday, just to show willing, just to jump through a hoop that might get us to the right curacy.
And, unexpectedly, it was perfect. A lovely incumbent, a warm congregation, a community who really didn't seem to be entirely what their reputation stated, exciting things happening missionally, some very nice countryside nearby. Paul and I agreed that this was the first curacy we have looked at (and, of course, it is the third place we have visited) where we have felt a very genuine and profound sense of calling.
Completely unexpectedly.
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!
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.
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.
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