Protecting the herd

I just can't help thinking, if Daisy was still alive, what would it be like? How would we have coped - she would have been one of the so-called "shielded ones", those who received a letter at the beginning of lockdown  telling them to stay at home for twelve weeks and not venture outside.

Her school is closed. She barely went to school in her final year anyway, there were so many problems trying to get nurses able to be with her in school and I was concerned for her safety.  So I guess I would have been attempting to home school her.  She would have been missing her friends, missing walks in the park, her regular trips to the local shops which she loved so much.

I remember when...

I remember when you could walk

When you only had one tube

attached to a benign pump

when we dared to dream

about mainstream school

independence

sleepovers

a life of your own

when caring for you didn't need a nursing degree

or a 24 hour team

when we had hope

that you could just be a little girl

and not a patient

or a condition

or a diagnosis

now we just hope

that we can fill your time

with love and laughter

and take away the pain

I'd give you one.....

......and so would my children

We have had the conversation about what we want to happen to our organs when we die.

Have you?

Have you thought about it?

Have you discussed it?

Have you registered as an organ donor?

More importantly

Have you thought about what would happen to your child's organs if they were to die before you?

That's the tricky one isn't it?

They choose vanity, we choose life

This picture appeared on my facebook timeline this week....

I get a lot of medical pictures and information coming through my timeline, it's inevitable when you consider how medicalised our life has become.  But on closer inspection I discovered this is not a picture of two people on IVs in hospital.  No, this is the actor Ryan Phillipe and his girlfriend relaxing while having intravenous infusions of vitamins and fluids in order to give them an energy boost.

Reflections & Resolutions

This is the toughest time of the year for us Special Needs Parents, New Year brings with it not a sense of expectation but almost a sense of dread  - what will this year throw at us? Where were we this time last year, where are we now?

For me it is a point in time, close to Daisy's birthday where we can mark where we are with her, and it tends to take all my normally optimistic and mindful outlook to drag myself out of the gloom and focus on the year ahead as I look back on what has happened so far.

Happy 5th Birthday " Was this in the Plan?"

Today is 5 years since I started this blog.  5 years ago, Daisy was 3 years old and was once again in hospital,in the early weeks of a stay which eventually lasted for 12 months.  5 years ago this month she had her first central line inserted into a main vein into her chest, the tip of which rests near her heart, and she started on the intravenous nutrition (TPN) she still needs, 5 years on, to keep her alive.  I started this blog as a way of recording what was happening in our lives at the time, over the years it has evolved and changed as we have had to adjust and change to the constant challenges being thrown to us.

The unwelcome house guest

A stranger turned up here a few months ago, we hoped they would be a passing house guest but it appears they have taken up residence and turned our home upside down.

Daisy has epilepsy and epilepsy has us in it's grips.  It's turned our world upside down and when we thought things really could not become more complicated, they did.

This is the house guest you loathe, some of our others, like TPN and Catheters and Stomas, we've grown to accept and they have become part of our lives, fitting in to our routine so that we were able to have some sort of an existence.  But epilepsy is anti-social, seizures come without warning, they disrupt plans, throw you off guard and turn you into a gibbering wreck.  When Daisy had her first few seizures a good friend wrote to me and said that she could cope with all the issues her daughter faced but the epilepsy was the thing that had tipped her over the edge.

Learning a new vocabulary

Over the years we have added to and expanded our vocabulary of medical and special needs terms - in the early days it was the language of NICU (neonatal intensive care unit) with NG feeding, cpap, jaundice and corrected age creeping into our conversations, then it was genetics speak, then Costello Syndrome speak and before long we found ourselves holding our own with Daisy's doctors as we spoke about gut inflammation, fluid balances, neuropathies and myopathies, stomas, catheters and TPN.  You know you're an intestinal/bladder failure parent when you know all the reference ranges for your child's main blood tests, or you start photographing the different shades of bile that they produce from their free drainage, or when you get excited because their fluid balance chart adds up!

Just keep swimming........

Those readers who have followed my blog for a while know that sometimes I drop off the blogging radar, mainly because of workload at home or sometimes because I have lost my blogging mojo.  I guess the last few weeks has been a combination of the two.  Poor Andy still has his arm in plaster following a (non-alcohol related) fall the day after his 50th birthday, and this has meant my workload has gone sky high as a broken

Here's to the geeks - because of them I'm not alone

Sir Tim Berners-Lee, Inventor of the World Wide Web

When I left university and came to London with Andy my first job was a graduate traineeship at Mercury Communications, the telephone company set up as a rival to the de-nationalised British Telecom.  I worked in various bits of the company - from the mobile phone division, to the messaging division to managing the Criminal Justice Sector Marketing for the Government Sector Division.  At this time the internet was in its early infancy and being developed and used by techie people in darkened rooms.  Not long after I joined Mercury a new Chief Executive was appointed, his name was Mike Harris - he was (and is) a real business visionary and he spearheaded a company wide programme called Imagine 97 (bearing in mind it was 1992 at the time!!!) which was focused on getting the whole company to think about the possibilities of communication and technology offered by the company five years on (and beyond).  I vividly remember the main premise was that the communications sector would grow to offer what the company called "PIE in the Palm" - People, Information and Technology in the Palm of your hand.

Extreme Multi-tasking

On Sunday I completed my last run in the challenge I had set myself earlier this year to run 7 races to mark 7 years of care by our hospice, ShootingStar-Chase for our family.  The last race in my series of runs was the Loseley 10k - a very challenging cross country run over fields, up hills and down sandy tracks - made even more challenging by the torrential rain we drove through to get there!  I was joined by my lovely boys, Theo and Jules who had been cajoled into running the 4k version of the race.  I had also agreed to give a speech to the assembled runners on the start line about the hospice and what it means for our family.  This is what I mean when I titled this post extreme multi-tasking  - really how many other people turning up for that race had had to get up several times the night before to administer pain relief to their child, disconnect her TPN, rouse the reluctant boys, battle through driving rain and closed roads then stand up and give a speech before jumping off the stage and running 10K across muddy fields????

Faster, Higher, Stronger.....

When Daisy was nearly 7 months old she had a gastrostomy tube inserted as an emergency case.  It was an emergency because at the time we were relying on a nasal-gastric tube to feed her and her vomiting and excess secretions meant that it would come out several times a day and she was losing weight and dropping her blood sugars constantly as a result - as we now know the weight loss was going to happen regardless as her gut became unfeedable but at the time we had to try every option.

Gastrostomy insertions are often done as a day case or overnight but at that point in her life Daisy was needing intensive care after every anaesthetic so she had 24 hours in ICU plus a couple of days on a surgical ward before she was well enough to come home.

That week in July was a big one in the UK and Daisy and I were able to witness it all , while the rest of the family were at work and school.  On the 6th July we turned on the TV for the live announcement of the decision on who was to host the Olympics in 2012 - I had been following the progress of the bid keenly and was over the moon when the announcement was made, hugging Daisy, not really thinking about what the next 7 years would bring.

Take time to smell the roses

When I walk home with Jules, my 9 year old son, from school we pass a house which has roses in the front garden.  These are not the weedy, insipid offerings you see on garage forecourts, these are big, blousy, fragrant roses - the old fashioned ones I remember from my childhood.  And more often than not I stop to smell them. Just have that moment, breathing in their heady scent, before the chaos of the evening descends.

I have Costello Syndrome, Costello Syndrome does not have me

I have amended this quote from one I saw on the back of a running vest as I ran the Bupa London 10k on Sunday - the quote I saw was "my name is Jo, I have MS, MS doesn't have me".  That really inspired me.

If Daisy could talk fluently and tell you how she felt then I think she would say this because this is how she lives her life.

Every single day is a monumental challenge for Daisy and truly I do not believe even those closest to her know what a challenge it is - I guess only Andy and I as her parents have a little inkling of the mountains Daisy has to climb day in day out just to squeeze every moment out of her day and be the little girl she wants to be.

A Good Day

Yesterday was a good day, not anticipated to be as it involved several appointments at Great Ormond Street.  As we live in London, albeit in the suburbs, our appointments tend to be scheduled for later in the afternoon, however anyone who knows London traffic knows that it's often easier to drive out of London than to drive around London.

Having picked Daisy up from her school it then took me 90 minutes to drive the 14 miles from school to hospital, 90 minutes of roadworks, delays and diversions with a little girl in the back of the car who doesn't like to sit still for too long and no-one else to entertain her.  The only CD in the car suitable for Daisy was the Singing Hands Christmas CD so on a rainy May afternoon, stuck in gridlocked London traffic Daisy and I sang and signed Christmas songs - shall we refer to it as a little seasonal rebellion rather than the actions of a desparate mother?

Of course once I drove around and around the streets of Bloomsbury looking for a place to park which the ever vigilant Camden Council parking posse would approve of, I was late for our first appointment.  This was with our Stoma nurse, a very important appointment as with four stomas Daisy needs a lot of help from nurse specialists.  I was even a bit late for the second appointment but I always assume the clinic is running late (normally delayed by parents with me with a list of questions) so it wasn't too bad.  Appointment two was Orthotics.

A Military Operation

We are going on holiday, a real family holiday.  This will be the first holiday in a long time.  We have been very fortunate to have two holidays in the last few years but both of these were through two amazing charities Caudwell Children and Torbay Holiday Helpers Network.  These were supported holidays with organised trips, support and back up, we didn't have to do too much thinking or planning and there was the constant reassurance that there were people around to help us if things went pear shaped.  This holiday is a normal, family, self-catering, travelling by ferry, week in France - eeeeekkkk!

We love France, we love the beach, we need to get away, so a few months ago we started working on how we could manage a family trip across the channel.  The first thing was insurance.  OK so it's France, it's hardly the other side of the world, and theoretically our European Health Insurance Card would cover any medical treatment Daisy or the rest of the family would need.  Yes - theoretically, until you start thinking about scenarios...so, what if we have booked our ferries and are unable to travel because Daisy is unwell, we cannot afford to lose several hundred pounds.  What if she has a line infection or septic episode while we are away, well yes she could receive treatment in a French hospital but if she needed a new line then she is tricky to anaesthetise, she has had numerous line insertions and can only really have new lines fitted by the Interventional Radiology Consultant at Great Ormond Street..what if, what if..... When we started going through the scenarios, good travel insurance is essential.  While we do as much as possible to minimise the risk, there are so many elements to Daisy's health that are out of our hands.

The Adapted Family

I'm participating in the Define Normal Blog Hop this week where the challenge has been given to us special  needs mums to define what we consider normal in our lives and embrace the things that make us different to other families.

I was thinking about this and started remembering stuff I learned a long (very long) time ago at University when I was an undergrad studying Social Anthropology.  My interest was specifically how peoples adapt to their environment and how communities evolve to take into account the external influences of their environment.  For those of you who are curious, my dissertation was on the significance of the Potlatch Ceremony among the Kwakiutl peoples of the Pacific North West....but that is all another world away..

So I was musing on the blog hop topic, which focuses on the things we take for granted as special needs families which may be perceived as weird or odd in the wider world and I realised that what we all do is adapt, what actually is "normal" anway?  The only thing that is actually normal is a cycle on the washing machine... we have all adapted to fit our own influences that shape our family.  Things that I take for granted like putting a tube into my daughter's tummy to empty her bladder are clearly a bit away from the norm for any 7 year old, but we have adapted our lives to accept that if she is going to avoid urine infections this is what we need to do.  The normal for us is that way because our family has adapted to survive as a unit around the demands of the needs of the individuals in it.  We all do what works for our family unit, regardless of whether or not there are additional needs.

Not Waving But Drowning

Yes, I am still here, I know that it's been a while since I updated but as you can guess from the title of this blog, life has just been a bit too overwhelming to find the time/motivation/energy to fire up the laptop and write about it, but I think I have my blogging mojo back and in the interests of ensuring that the world understands what it is like for families like ours it's time to pick myself up and get the words down..

I hardly dare to write this but it's been two months since Daisy's last emergency hospital admission.  Two months where well meaning people who don't know my world equate no hospital stays with Daisy being well.  If only this was the case, no hospital stays are because every day is a battle for us to keep her out of hospital. Not being in hospital does not mean that she is better, it means that bar a life threatening emergency there is nothing else they can do for her.  And actually the definition of life threatening emergency seems to be stretching a bit now, a couple of years ago we had to take Daisy to hospital if she spiked a temp or had positive cultures, now we judge whether this is a "manage at home" situation or a "call 999" one.  The last admission was for intravenous pain relief but since then Daisy has been on various intravenous antibiotics at home to manage various bacteria which colonise the bits of plastic in her body. Now together with the TPN drip we put up every night and which provides her nutrition into her blood stream, we also draw up at least one antibiotic - a few weeks ago it was meropenem, now it's augmentin, IV antifungals are being mentioned too.....in addition to this, because of her worsening foregut motility and severe reflux (we are not talking vomiting here, we are talking gut renching, blue in the face wretching and projectile vomiting of luminous yellow bile...) we also administer anti-reflux medication intravenously.  Drawing up an IV is not like pouring out a medicine, each iv has it's own way of being prepared - some (if we are really really lucky!) are ready mixed, most need mixing with something else - saline, water or some other solvent.  They need to be drawn up, measured, air bubbles dispersed and administered.  Sometimes as a slow push, sometimes as an infusion via a pump and always with a saline flush between each medication.  So another compromise we have had to make to keep Daisy out of hospital and with her family is to add intravenous medication into our daily routine.  But it is working and she is definitely better on IVs than she was off them.  It's just sometimes it would be nice just to be Daisy's mum, sometimes it would be nice to say "tell you what let's not bother with putting the TPN on tonight, let's go out to the park instead", sometimes it would be nice not to have to change her catheter knowing it's going to make her cry or drag her away from her toys to change her stoma bag because the contents are leaking all over her clothes and burning her already sore skin....sometime there are so many things I would like to do rather than be Daisy's nurse but this is the pact that we have made...for Daisy to be here with us, for Daisy to be enjoying life then this is how it needs to be.

It's just sometimes when I have a brief moment and allow myself the really think about the enormity of the situation I realise how unfair it is, on Daisy, on us, on her siblings.  Why does she have to have this rare, sporadic syndrome?  It's nothing to do with one of us carrying a rogue gene, or our age or race, just one of those, chance in a million (make that 28 million) occurences that could have happened to any of you.  So why then having this dodgy gene mutation does she then have to have intestinal failure meaning that she relies of chemicals and machines and plastic to live and then the final cruel blow - why does her bladder then decide that it's going to join the party too?  That's just not fair.

It's the ripple effect that's tough too - Daisy has three siblings.  These four children have one shot at childhood and while we constantly tell them there is no such thing as a normal family, a perfect life, I feel guilty at how sometimes I rely on their help as I change stoma bags and catheters and run through TPN when there is no other adult around to help me.  Ask any of my children about TPN, Hickman Lines, Mitrofanoff stomas, gastrostomies and jejenostomies and they will confidently tell you all about them, probably more confidently than a junior doctor.  They seem oblivious to the physical manifesations of Daisy's disease and see her simply as their sister and she in turn has them completely and utterly wrapped around her little finger.  Daisy rules the roost at our house, and given her larger than life personality I think she would still rule the roost despite all her medical problems.

But for all of us, while we present a facade of coping those feelings of drowning are bubbling under.  All three of my older children are receiving emotional support - one from CAMHS (child & adolescent mental health services) , two from the hospice and young carers groups.  Andy and I attend counselling sessions.  These sessions have given me time to reflect and take stock and think about me and what's important.  I felt that because I am intelligent, articulate, willing but I think above all, so desparate to have Daisy at home and keep the family together, I was being laden with more and more work and responsibility and risk to manage this.  I felt like I had been thrown into a lifeboat with a load of supplies and set adrift left to fend for myself while everyone waves from the land.  But the thing is, I am not waving, I am drowning - I am drowning under the overwhelming workload that comes with looking after a chronically sick child, trying to be there for the other children and listen to their problems, trying not to get angry with Theo's asperger's outbursts and meltdowns and reminding myself it's not him, it's the autism, drowing under the paperwork and bureaucracy that comes with my world.....and it seems to me that the more that the world thinks you are coping, the less likely it is to check if you really are.

So when I stood back after a recent long, all day appointment at Great Ormond Street and took stock of all the addtional meds and IVs that we were being asked to add in to our already packed daily routine and I had an epiphany and I realised I could just say no.  So I did.  It was not about putting Daisy at risk, it was about ensuring that overloading me (because remember it is mainly me, Andy works long long hours to keep a roof over our head) did not put Daisy at risk.  This was a really liberating feeling because suddenly the wheels of support starting to turn and a better, more manageable plan was formed, a plan that could be managed at home taking into account the workload and Daisy's needs.  Since that time I have been on a bit of a roll, realising that I don't have to do it all.  I have stood back and taken a look at my life and what is important, for me the most important thing is my family and my marriage.  Since having Daisy I have gradually acquired other projects and interests to take the place of the career that I had to give up when she was born, these things have started to take up more and more of my time away from the family and I have realised this is not what I want, so taking advice from the great Homer Simpson I have asked myself "Can't somebody else do it?" and I have discovered that I am not infallible, the world will not fall apart if I withdraw myself from a voluntary group or committee, there will always be enthusiastic souls like me who are happy to take on more than the lion's share of service to the community!

I have not given everything up though, I have made room in my life for something that is just for me, long distance running.  I have run on and off since I was twelve, I ran a marathon at 13.  I may not be fast but I have the mental and physical stamina which ensures that I can run and run.  And recently this is what I have been doing, I plug in my music and run, morning, evening, it does not matter, running is my prozac, it's my time out away from everything where I can meditate to the repetitive rhythm and escape into music and thoughts.  Running keeps me physically and mentally strong to keep going, because I have realised that life with Daisy is not a sprint, it's not a marathon, it's an ultra marathon, iron man, triathlon, decathlon endurance event and she, and the rest of the family, needs me to be up to the challenge.

So I have regained my mojo and with it normal (maybe a bit more streamlined and focussed) service has resumed.

Preparing for the long haul

Andy is doing the night shift at GOS tonight and I really should be doing domestic goddess things like putting the washing away but instead I have snuck into Theo's room while he is asleep with a big glass of wine to check my emails and update my blog on his computer.

So here is the latest:-

Daisy woke up on Monday morning with a 40 degree temperature, not great when you are transferring to GOS for a procedure - anyway we loaded her up with nurofen and calpol and got into the ambulance. Interested to note through the ambulance window that there is another branch of Chariots Roman Spa in Streatham High road, we always look for it as a landmark at Vauxhall Cross on our many trips back and fore to GOS - not sure that conventional spa services are offered given the number of rainbow flags flying from the roof. Anyway, I digress...
We got to Rainforest ward and Daisy went into overdrive which is her usual for a visit to GOS - she lost a canula and then had massive bouts of bloody diarrhea. As with all of my children she does like to draw attention to herself. Daisy losing a canula precipitated something which Ihave never had to do before, have a stand up row with a doctor on a ward. As Daisy has tricky vein access the nurse in charge called the Clinical Response Nurses to come and canulate her, they have been trained to deal with children just like Daisy. So in strolled these two 6 foot, handsome male nurses singing songs from In the Night Garden - both D and I were weak at the knees. Very carefully and considerately they tried to get access to her veins but without success, they wanted to move to plan b, which was to call an anaesthetist. These are the people who can get a line into a vein where there is no vein.... However our dear ward doctor thought he could do better, he swaggered in and without even acknowledging Daisy began to pick up her hands and feet looking for access, Daisy started to scream and the hunky nurses disappeared, outranked by the egotistical doctor. The bottom line was I got assertive (while inwardly quivering) and he then told me that in 19 years in medicine he had never had a failed cannulation - I got the last laugh however, I told him that I did not want a junior doctor canulating my child, turns out he's not a junior, someone somewhere promoted him to registrar, god help us all.................

Joking aside, it's not been easy being back at GOS and persuading the team, most of whom were meeting Daisy for the first time, to make her more of a priority than they currently were. Her test results changed this. After a few delays on the Tuesday Daisy eventually went to theatre for her upper and lower endoscopy. She has had a lot of problems with anaesthetic previously and this had been our biggest concern while taking her to theatre, we just did not think about test results, so many have been inconclusive. Not this one. The consultant who had scoped her was waiting for us in the recovery room to show us the pictures he had taken of Daisy's gastrointestinal tract. Basically from top to bottom she has severe inflammation, ulceration and scarring - the pictures made us wince, her gut is raw...... He took lots of biopsies and blood and currently they are looking at whether this is caused by an increase in her existing gut inflammation, an autoimmune problem where the body attacks itself or the results of a viral infection. The problem is if it is the first two the treatment is to up her dosages of immunosuppressants and steroids, the side effects of which are cancer,something her pre-existing costello syndrome gives her a 17% increased risk of, if it is a virus they need to look at treating it.

These results now meant that Daisy could be prioritised to have a permanent line placed into her veins as there was no way she was going to be able to continue to take nutrition in her stomach. So at 4pm today she went to theatre again to have a portacath placed. This is a permanent line into her jugular vein (or dracula vein as the surgeon so tastefully called it).

All the Gastro consultants and registrars will discuss Daisy's case tomorrow and meet with us midday to discuss plans, we have asked that an oncologist be involved in these conversations given her increased cancer risk and the possible treatment options. We do know that now we have permanent vein access we can start Total Parenteral Nutrition (TPN) which is giving her nutrients through her veins and bypassing the stomach altogether. This will probably happen in the next 24 hours.

Our big hope is that there will be a treatment plan and Daisy will be moved back to our lovely Queen Mary's Hospital for Children for her TPN and treatment.

The evening after Daisy had her scope Andy and I sat in Daisy's cubicle with a big bag of crisps and tried to take it all in. The past four years have been really tough, I was in hospital for 3 weeks before Daisy was born and from the moment she was born we were looking for answers.... time after time tests have come back as inconclusive or within normal limits. Now we have a clear idea of what we are dealing with and the stakes have suddenly gone up.....

I came home tonight to be with the other children - they are so upset that Daisy is still in hospital but Andy and I have always tried to be completely honest with them. Realistically we will not be home from hospital for a long time, the bonus would be to get her closer to home, she may be in for her birthday and christmas.... I tried to get this across to the children and they were particularly amused by my descriptions of Daisy growling at anyone who came near her tonight. She is a fighter, our Daisy Rose..............