Freya’s Story

The Maternity Thief

Posted on by Bluemama

Today Freya is 9 months old.  9 months old.  I can’t even compute that.  It means that we are 7 months post-diagnosis, and yet it seems like only yesterday that we were taking our baby girl to A&E with a high temp and a low appetite, completely unaware that from that day on our lives would change forever.  I had my precious baby girl at home with me for 7 weeks before that fateful day.  Just 7 weeks; it was no time at all.  Then Kawasaki Disease stole into our lives, and stole away my maternity leave.

I have previously shared Freya’s journey, our journey, with her illness through a number of blogs, taken from a journal that I wrote during our 6 weeks in the hospital from 31st May to 9th July 2015. Before she became ill, I had spent most of those early weeks resting, making the most of being a mature mum who had no desire to rush into doing anything too much at all.  I was going to allow myself to enjoy this one, and the housework could wait.  So almost all of those 7 weeks, give or take a few visits from friends and relatives here and there, were spent cuddled up on the sofa with my little ‘Peanut’, and I watched movies or slept to recharge my batteries after what had been a pretty tiring delivery.  On the 30th May 2015, when my parents came to visit, we went for a day out to Cannon Hall Farm, a local attraction where my older children could feed the animals, and blow away some cobwebs with some fresh Summer air.  I was content, no, more than that, I was happy beyond what I could ever have imagined when I found myself unexpectedly pregnant again at 40.

The following day, Freya awoke as normal, but instead of guzzling down that first bottle of the day she laboured through it with a stuffed up nose, and after what seemed like an age of feeding she’d managed about an ounce of formula (I had stopped breastfeeding the week before).  Sure, I thought it was strange, but not being a particularly over-anxious parent I put it down to her snuffly nose, and decided to keep an eye on her.  She didn’t take the next feed either; I guess that was around 9am, and whilst my concern was peaked, I didn’t make any rash judgements about the situation.  She was sleepy, but what 7-week old baby isn’t?  That’s all they do! Feed and sleep, sleep and feed.  Except at that moment, Freya wasn’t too fussed about the feeding part.  I would say it was around 11:30 or 12 when I decided that I couldn’t let her sleep any longer without trying to get some milk in her, so I made up a bottle and went to rouse her from the bouncy chair she was sleeping in.  She looked warm, and was hot to the touch, so I fetched the digital ear thermometer and took her temperature.  38.3ºC.  She had a fever.

Again, this didn’t panic me particularly, and I sent my husband to the local Mothercare store to buy a medicine dispensing dummy (I’d had one with my son, and it is a great way to get medicine into a tiny baby).  While he was gone, I fished out the Calpol (paracetamol) and began to read the label for the right dosage.  “From 2 months” read the label.  Hmmm, should I give it to her?  Was it safe?  She was only a week off 2 months, and surely they were over-cautious with these things? But I couldn’t risk it – she was too precious, and I would never have forgiven myself if anything had gone wrong.  Both my mother and mother-in-law were home with me, and both agreed that if I was concerned, I shouldn’t mess about.  I should take her to A&E (the ER, for my American readers) – it was a Sunday, you see, so our GP surgery was closed (a factor in our KD journey that later I would be grateful for).  I opted to call the out of hours surgery number, and after explaining that Freya had a snuffly nose, high temp and no appetite, and that her breathing was becoming quite laboured (her tummy was moving up and down, as opposed to her chest), they commented that it was unusual for a baby as young as Freya to have a fever and directed us to take her to the local hospital right away.

The rest, as they say, is history.  But I often get asked about Freya’s journey, how we knew, what her symptoms were, so I thought it would be useful to document our experience with KD in 2015.

Week 1 (31st May to 6th June 2015)

  • Visit to local hospital A&E with low appetite, high temperature and laboured breathing.  Lethargy was not noted, as she was a tiny baby who was naturally sleeping a lot.
  • Transferred to Children’s Observation Unit for observation.  Immediate concern was Group B Strep as I had tested positive during the pregnancy.
  • Admitted to Children’s Ward for overnight observation and placed on IV antibiotics as a precaution (standard procedure for suspected meningitis, which can develop in babies who have contracted GBS from the mother).
  • Following morning around 5am, Freya develops a rash on her torso, which quickly spreads to her limbs.  Doctor is called who states that Freya’s body is shutting down and she is wheeled to the High Dependency Unit (HDU).
  • Freya is treated with a number of fluid boluses (“a rapid infusion of intravenous fluid or medication that is usually administered to correct a life-threatening condition”, Wisegeek.org).  I don’t know what they put into her body, I just know that they acted like her life depended on it, and I looked on, heartbroken and in shock.  I was alone; I called my husband and told him I thought he should come to the hospital.
  • Remains in HDU for 3 days.  IV antibiotics (Amoxycillin and Cefotaxime) and fluid are administered via cannula sites, as well as regular antipyretics (paracetamol and ibuprofen).  Due to the size of the tiny veins, the cannula are unstable and new sites have to be found daily, sometimes more often.  Monitors attached by wires to Freya’s body show a very high heart rate, and low oxygen levels.  Temperatures continue to spike despite medication to bring them down.
  • Condition stabilises, and Freya is moved back to the Children’s Ward.  Feeding is via an NG tube up her nose, and she has cannulae in her wrists and ankles.  Eventually a cannula is inserted in her head as the other sites fail.  Blood tests and throat swabs are not conclusive and do not test positively for any standard illnesses.  Continue to suspect GBS and/or bacterial meningitis.  CRP reaches over 300.  3rd antibiotic is introduced (Gentamicin).  Lumbar puncture is needed to diagnose meningitis, but Freya is too sick to undergo the procedure.
  • Day 5, nurse confirms nasal swabs test positive for Rhinovirus (the common cold).  One consultant states that Rhinovirus could make a tiny baby very sick. Another says “Rhinovirus does not do this to a  child”. Chest x-rays and cranial ultrasound are clear.
  • Day 6, Freya undergoes lumbar puncture.  Results show raised white blood cells, but not high enough to indicate bacterial meningitis.  However, Freya has been on 3 antibiotics for 6 days and it is considered that the condition may already have been fought off
  • Day 7, we are told that on a scale of 1-10, with 11 being dead, Freya is a 10.

Week 2 (7th to 13th June 2015)

  • Day 8, consultant (one we haven’t seen before) says that he is not happy that a diagnosis has not been reached and that if it was his child he would expect answers. Advises he has arranged transfer to a nearby Children’s Hospital where they had access to more resources, including the ability to carry out an echocardiogram (heart scan).  Freya has her first ride in an ambulance. That evening I point out Freya’s swollen feet to the on-duty Consultant. He requests an x-ray on her chest, head and stomach, and asks for her foot to be x-rayed for suspected injury at the cannula site (I believe this was pre-peel swelling and a symptom of KD).
  • Day 9, chest, head, stomach and foot x-rays are all clear.  Echocardiogram shows a slight murmur, but is clear otherwise.  Advised a murmur is not unusual in a newborn baby and usually resolves as the heart develops.
  • Immunology and Infectious Diseases run various tests on daily blood samples.  Antibiotics are replaced with Meropenem due to differences in hospital protocols.  Acyclovir is also introduced (known for treatment of the herpes virus).
  • Day 10, low haemoglobin levels result in Freya needing a blood transfusion.
  • Day 11, MRI scan is undertaken to look for clusters in the brain that would indicate GBS infection.  Freya is still so sick, she sleeps through the MRI scan and does not require a general anaesthetic.  MRI results are clear.
  • Day 12, Freya is placed under general anaesthetic in theatre, and undergoes a bone marrow aspiration to test her cells for Leukaemia. Tests are negative.  Two further lumbar punctures are undertaken, but unable to collect any spinal fluid.  Prolific rash appears on Freya’s arms and legs.  Immunology Consultant requests Rheumatology opinion.  Rheumatologist believes it is likely to be an infection, but requests a follow up echocardiogram and further blood tests.
  • Day 13, sent for follow up echo, Sonographer says that he is looking specifically for signs of Kawasaki Disease.  This is the first time I had heard those words.  Sonographer apologises for putting his foot in it.  Rheumatologist arrives to inform us that they have reached a diagnosis.  Freya has Kawasaki Disease, and her coronary arteries are dilated.  She requires immediate treatment of Intravenous Immunoglobulin, a blood product containing antibodies from thousands of donors.  It is administered intravenously over 12 hours.  Great Ormond Street and  Newcastle Children’s Hospital are consulted and Freya is given methylprednisolone (high dose IV steroids) and aspirin (20mg).  Seen by Ophthalmology to look for any issues with her eyes, nothing of note identified.  All antibiotics are stopped.  Contact made with Cardiologist at Leeds General Infirmary who says he is “not excited” by the coronary dilation.
  • Day 14, Freya receives the second half of her IVIG infusion (due to her size she had to have the dose over 2 days). Echo shows no change from previous day.

Week 3 (14th to 20th June 2015)

  • Day 15, follow up echo shows still no change from previous two days.  CRP remains elevated.  Rash has gone completely, and temperature spikes have reduced in frequency.
  • Day 16, further echo shows significant increase in coronary artery dilation.  The word aneurysm is mentioned.  All three coronary arteries (left, right and left anterior descending) are dilated to over 5 times the normal diameter for a baby of her age. A second dose of IVIG is required.  Contact made with Leeds Cardiology who insist that Freya is transferred to their Cardiac Unit. IV steroids stopped, and oral steroids are prescribed.
  • Day 17, second half of second IVIG dose is administered and Freya is transferred to Leeds.  Echo is carried out by Cardiologist who concurs with Sheffield’s findings and identifies a leaking aortic valve.  Freya is admitted to the Cardiac HDU.  Leeds Rheumatologist discusses possibility of administering a drug called Infliximab as they believe the inflammation is still ongoing.
  • Daily echo’s show no improvement, but no worsening either.  Request made to NHS England to give Freya Infliximab, not widely used in the treatment of KD, and not permitted for use in babies under 3 months (at that hospital at least).  Funding agreed based on Freya’s case; “a rare and severe presentation” of “persistently active Kawasaki Disease” (letter from NHS England granting funding).  Warned of the risks; Infliximab switches off TNF-alpha, the protein that helps the immune system to fight cancer (although it should be noted that this has been found in patients receiving the medication over prolonged periods, and no evidence has yet been found of malignancy following a single dose).  Cardiologist explains the risks associated with Freya’s condition; stenosis (narrowing of the arteries), clotting (causing potential heart attack) or rupture (unpreventable without cure).
  • Day 19, Infliximab infusion is given with no adverse reaction.  Freya is transferred back to Sheffield the following day

Weeks 4-6 (21st June to 8th July 2015)

  • Begin weaning steroid dose with a view to ceasing after 3 weeks.
  • Bloodwork shows improvements.  No temperatures or rashes.  CRP dropping to near-normal levels (13 on  Day 21).
  • Day 26, ambulance transfer to Leeds for cardiology follow-up.  No change. Advised unlikely to see any improvement for at least a year.
  • Allowed home for day release, days 28 and 29.  Discharged on Day 30 with instruction to return for bloodwork in one week.
  • Day 31, Freya’s nappies show blood in her stools.  Return to Sheffield Children’s Hospital with gastrointestinal bleeding.  Re-admitted to the ward.  Gastroenterologist wants to stop aspirin, Cardiology refuse.  Administered IV lansoprazole.  Great Ormond Street confirm there can be a small window to cease the aspirin if necessary.  Freya’s formula is switched to Neocate, a mild non-cow’s milk protein formula. Bleeding stops within 24 hours.  Ultrasound shows abnormalities in the arteries in Freya’s bowel.  Barium swallow test shows normal function.  Diagnosis: cow’s milk protein allergy exacerbated by KD inflammation and medication.  Steroids weaned at faster pace than originally planned.
  • Day 37, follow up Cardiology appointment in Leeds shows a reduction in the dilation of the coronary arteries (our “Wow!” moment) and the leaking valve has corrected itself.
  • Day 38, Freya is well, but kept in as a precaution.  Lips are still cracked and sore, bleeding when she cries.  Finally discharged on Day 39 after Barium Swallow test returns a normal result.  All bloodwork within normal levels, with the exception of ESR which remains slightly elevated.

Since then…..

13th July – follow up Rheumatology appointment (Sheffield) shows ESR remains elevated, but declining.  Cardiology follow up (Leeds) shows no change from previous echo. Aspirin dose is increased based on Freya’s weight gain (standard anti-platelet dose in KD patients is 5mg per kilo).

6th August – Day 68, follow up Cardiology appointment shows further reduction in the dilation of the coronaries, with the right coronary artery (RCA) normalised, and the LCA reduced to 3mm (still large for a baby, but not considered as severe).

10th August – Rheumatology Follow-up (Sheffield) – happy with progress,  all bloodwork has returned to normal ranges

13th August – Ophthalmology Follow-up (Sheffield) – discharged

3rd September – Gastroenterology Follow-up (Sheffield) – happy with progress

7th September – Cardiology Follow-Up (Leeds) – no change.  Care transferred to Doncaster.

16th October – Gastroenterology Follow-up (Sheffield) – happy with progress

4th November – Cardiology Follow-up (Doncaster).  No change.  Request transfer back to Leeds due to poor experience.

11th November – Gastroenterology Follow-up (Sheffield) – happy with progress

And there it is.  The last 9 months of my life on maternity leave.  Writing it down like this has highlighted to me why I feel so exhausted, and so cheated of the year I had planned to take off with my new daughter.  As I type, tears have begun to run down my cheeks.  I think that’s what upsets me the most.  The unfairness of it all.  When I gave birth to Freya, when she was finally here, I decided it was time to banish all that negativity and really live life.  I was going to enjoy every second of my maternity leave with her.  This was a chance I wouldn’t get again.  I imagined picnics in parks in the Summer sunshine; instead I watched other mums with their babies through a hospital window.  I imagined meeting new people as I introduced my baby to new experiences; instead I kept her away from other children because of a repressed immune system, and later not being able to immunise or protect against the potentially fatal consequences of illnesses like the flu or chicken pox.  

Don’t get me wrong, I have made some wonderful memories along the way, and in between the hospital stays and medical appointments, the calendar is peppered with visits to the Brontë Parsonage Museum, and Manchester’s Christmas Markets.  But where there are blanks on the calendar, there have been numerous phone calls battling the prescription of Freya’s aspirin, countless hours of research, letters to MPs…the list goes on.  The fact is that Kawasaki Disease stole my daughter’s health, took away my happiness, challenged my beliefs as parent and protector, and robbed me of my maternity leave.

Things are starting to settle down in 2016.  We are waiting for Freya’s next cardiology appointment where we can only hope for good news.  A blessing to stop researching for answers I will never find came in the form of e-mail responses from two cardiology professors, and specialists in Kawasaki Disease, and I feel a sense of relief from that.  Freya has an appointment with Immunology at the end of this month where I hope to get some closure on the immunisation issue and develop a plan to catch up on the vaccinations that Freya missed, plus those that might save her from a worse fate (rare or not!).  Perhaps we might even be able to take a holiday when we know she is less likely to pick anything nasty up on an airplane.  In March we see the Dieticians at Sheffield Children’s Hospital to discuss the introduction of dairy into Freya’s diet once she reaches one year old.  And following that, if there are no adverse reactions to cow’s milk in her diet, we should have our final Gastroenterology appointment.  I am not sure how long we will continue to see Rheumatology, but they mentioned 2 years at one point, so I guess we will wait and see.  That will leave us with Cardiology, which is likely to feature in Freya’s life for the foreseeable future.  They said “for life”.

I have 3 months left with my beautiful daughter, before my maternity leave comes to an end.  Instead of being a time of transition into the parental role, it has been a rollercoaster that I have wanted to get off from the first day Freya showed signs of illness.  I have enjoyed many precious moments, overshadowed by sadness and fear.  But I have known true love, and I have fought with every inch of me to keep my daughter safe.  I cannot imagine a life without her in it, and because she is here I have to be grateful, even if the past year has been hateful.  I cannot even start to think about leaving her in April.  Seems the challenges for me are not over yet.

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I wish I could turn the clock back to these days, cuddling on the sofa without a care in the world

Goodbye 2015

Posted on by Bluemama

My New Year post is a little behind schedule this year, but it has been a busy couple of weeks, with a trip to London, Christmas, a wedding and New Year crammed into a short space of time.  And not only that, but 2015 was a pretty damned big year for me; one that required appropriate reflection.

Towards the end of 2014 I had begun to feel comfortable in my own skin for the first time in a long time, if ever before.  I had battled for the latter half of the year with a lot of negative thoughts and feelings towards an unplanned pregnancy that was going to ruin my fun, my career, my life.  But just before Christmas of that year, I had reunited with some old school friends who, coupled with some professional counselling, helped me to reach an understanding with my past, appreciate my present, and look forward to the future.  My life wasn’t over, it had just been thrown a pretty big curveball, and it was something we could learn to live with, perhaps even to enjoy.  Before my catharsis, I had believed myself an unlucky person.  Of course I realise now that it wasn’t really the truth, and that my old friend ‘Ant’ was dominant at the time and had stolen every ounce of reality I had.  She was determined to make me wallow in the darkness of this life that I hadn’t counted on, but I broke her spirit and ended 2014 triumphant.

On the 29th December 2014 I posted a blog titled ‘Metamorphosis’, which was the first blog that I publicly shared on Social Media, no longer concerned about hiding behind the mask of ‘Bluemama’;

“…2015 is a year of new beginnings for me in more ways than one.  It is the year my family will be complete, and the year that I will allow myself to feel truly complete.  No longer half a person living half a life, missing perfect moments whilst over-analysing the past.  These past few months have shown me a glimpse of the joy that can be felt through living this precious life in the present…”

I believed every word, but I wasn’t ‘cured’. Lord knows how many of my 40 years had been dedicated to the creation of a negative force in my mind that forced me into catastrophic thinking and general negheadedness (that’s my word).  Yes I felt more positive about my future, and I had come to terms with the massive change that was about to happen in my life, but I was troubled by worries about the birth, worries that were more exaggerated than the ‘normal’ pregnancy and birth concerns.  I was convinced that my baby would die, and when I was diagnosed Group B Strep positive during the latter weeks of the pregnancy, I believed I had found the killer.

I worked pretty much up to the wire, in a full time job that had only recently been created and I had a lot to do before I could walk away with comfort.  I had a team to recruit, as well as my replacement, and I had big projects that needed to be finished in my absence.  Needless to say I didn’t get much time to ‘wind down’ and as I was booked in to be induced on the due date because of maternal age, I didn’t get much of a chance to prepare for the next stage either.  My maternity leave commenced on the 5th April 2015.  I was induced on the 8th April.  And Freya Ellis Belle McBride was born happy and healthy on the 10th April.  I will never forget the joy that I felt when she finally entered this world, and stole her place in my heart.  To me her arrival was like a shining beacon in the darkness, telling me how silly I had been to fear the worst, and how many hours I had wasted on negativity and unfounded worry.  She was here, she was beautiful, and she was my reason to be positive about the future.

“…She was brought into my life to teach me some lessons, but most of all she was sent to me to show me that you really can dare to dream…” (Welcome to the World, 15th April 2015, Bluemama)

“…One of the first lessons I have learned is to embrace the gifts we are given and to dare to dream that sometimes good things do actually happen…” (No time for blogging, 20th April 2015, Bluemama)

“…Every now and again a tiny little voice starts to whisper concerns about something happening to my precious little girl, but I have some allies up there in that mind of mine swatting those thoughts away like pesky midges.  I think right now the worst that could happen…is that I could kill her with love…” (Obsession, 23rd April 2015, Bluemama)

On May 7th, I wrote a tiny blog titled ‘Cleansing the soul’.  I truly felt that the birth of Freya had healed a troubled heart and mind, and that I might look forward to a life of hope and dreams, no longer thinking the worst.  On May 20th I blogged again, sharing a poem that I had written for my son named ‘True Love’ which summed up the strength of the feelings that I had for Freya as well as it had for him.  It would be the last blog I would write for a while, and 11 days later hell opened its doors to us and stole my perfect, normal, happy life away from me.

The 31st May 2015 was when Freya’s Story ‘began’.  I shared my first blog about those missing weeks on the 19th July.  You can find those blogs if you wish to be acquainted with the full account of what took place between the 31st May and the 19th July.  For the sake of brevity here, understand that on the 31st May, at just 7 weeks old, Freya became seriously ill and was admitted to our local hospital Children’s Ward where, after going into septic shock she was treated with suspected bacterial meningitis.  After 8 days of watching our baby get more and more sick, she was transferred to a nearby specialist Children’s Hospital where after days of various tests, including MRI scans and a bone marrow aspiration under general anaesthetic, and requiring a blood transfusion, Freya was finally diagnosed with Atypical Kawasaki Disease.  On the 12th June 2015 we were told that our daughter’s heart was broken, and on the 12th June 2015 my heart broke too.

Freya recovered from the illness and was finally discharged, with a requirement to return for frequent follow up with Cardiology, Rheumatology and Gastroenterology (due to the widespread effects of Kawasaki Disease on a child’s body, a number of medical disciplines are involved).  Her heart quickly showed signs of improvement, although improvement has reached a standstill for the time-being, and we await her next cardiology follow up in the coming weeks, where we can hope for further improvement, but expect no change.  She continues to take a daily dose of aspirin to prevent her blood from clotting within the dilated arteries; medication she is likely to require for the rest of her life.

There has been a lot to be thankful for since the horror of the Summer.  Freya is a remarkable little girl.  She complains about very little, cutting teeth without so much as a whimper.  She is happy and content, inquisitive and cheeky all in one.  She is just like any other baby on the outside, and whilst we know that she has a broken heart on the inside, you wouldn’t know it and it has (so far) had no impact on her little life.  I started ‘Freya’s Story’ as part of my blog and set up a page on Facebook (www.facebook.com/freyasstory) so that I could raise awareness, share information and Freya’s progress, as well as supporting other parents who might be going through the same thing with their child.  Ok, so it hardly went viral, but I have just under 700 followers, and that is 700 more people than might have previously heard of Kawasaki Disease, and the feedback I have received from parents all over the world has been humbling.

This year has taught me many things.  I gave Freya life, and she taught me the meaning of it.  My belief system has been annihilated and I fear death around every corner.  Kawasaki Disease showed up and slapped me right round my smug new mummy face.  Of course I knew that none of us is bullet-proof, but the realisation of just how precious this life is was one that has been hard to come to terms with.  You always think this kind of stuff happens to other people, don’t you.  Every day in this life is bitter-sweet.  Joy is guarded by sorrow, love over-shadowed by fear. You know those moments when you think about the future, small insignificant things that pop into your mind every now and again, like “I wonder whether her hair will be straight or curly..?”, or “I can’t wait to see her running around…” Imagine if every time you looked to the future you had something digging you in the ribs to remind you that you don’t know what that future holds, warning you not to become too complacent or to tempt fate.  That is what this life is like.  I don’t know what is around the corner for Freya, and no matter how hard I try to be positive and weigh up the probability of anything going wrong at all, the sun is never quite strong enough to break through the little cloud of sorrow that lingers.  But maybe that cloud is a good thing?  A reminder not to take anything for granted. None of us is promised a tomorrow, so if there’s something we want to say or do, we should do it now – you will only ever regret those things you don’t do.

Needless to say, this Christmas was an important one for us as a family, perhaps me more than the rest of us.  Freya’s first Christmas was one way of making wonderful memories that would absolutely ensure that 2015 was ended on a positive note.  And New Year’s Eve was my opportunity to stick two fingers up at Kawasaki Disease, turn my back on 2015 and take a step into a new year and a new chapter in our lives.

I have learned who really matters to me through this last year, and I will make sure that I continue to appreciate those people for years to come.  I have met people that I would never have come across had it not been for Freya’s illness, and have opened my heart to strangers who have quite literally saved my life (you know who you are, Kawasister).  I have won some small battles with medical professionals, and secured some contacts that resulted in a Virgin Fundraising link being set up to gather funds for Kawasaki Disease research through the links between Imperial College London and Rady’s Children’s Hospital, California.  I have many ideas and hopes for 2016, centred around giving back and turning the experiences of last year into something good, but I am not going to share those until they are more concrete and I can ensure that I will not dismiss the ideas on a whim; I don’t want to disappoint anyone by making promises I may not keep, most of all I don’t want to disappoint myself.

…….

Freya just woke up, she is still awake.  This is an unusual situation for us as she is usually fast asleep by 6pm and we don’t hear a peep from her until the morning.  Holding her in my arms just a moment ago reinforced for me the feeling of living in this moment.  I couldn’t feel angry or annoyed at her for waking, I don’t think I could feel angry or annoyed at her for anything!  I hope that one day I can tell her that I love her without tears being hot on the heels of those three little words.  And I hope that I never forget that whilst tomorrow might be stolen from any one of us, nothing can take away yesterday, or this moment.  

…….

My hopes for 2016 are that we get closure on some of the outstanding issues with Freya’s health.  I would like to obtain clarity around the issue of routine immunisations, and hopefully get caught up with those that she missed (all of them!).  I would specifically like to protect Freya from chicken pox so that I might be less concerned about her mixing with other children socially.  I do so wish to see her interact with her peers like a normal baby should.

I want to exorcise the Kawademons that still haunt me with flashbacks and intrusive memories, and eagerly await the start of treatment for that in the coming months.

I want to fulfil my promise to donate blood to give back for the blood and blood products that Freya received, ultimately saving her life.  And I want to give back in other ways too, but I’m going to keep quiet about those for a little while 😉

I want to continue to make memories with those special people in my life. I would particularly like to be able to take a family holiday this year, as we weren’t able to go last year, and the immunisation issue has prevented us from flying.  I want normal for me and my family.

This year has to be better than the last.  It has to be.  I mean, 2015 wasn’t all bad; it brought us Freya.  But let’s face it, it was shitter than shit for the most part.  Let life throw at us what it will, I no longer heed that threatening cloud. It can hover above my head and threaten rain wherever it chooses, but I am no fair-weather girl, and a bit of rain never stopped me from smiling.  What’s that saying I keep seeing on Facebook? “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”   

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Someone Else’s Story

Posted on by Bluemama

If ever there was a story that reinforces the need to raise awareness of Kawasaki Disease, then it is the one I will be sharing with you tonight in a blog that is very different to my usual writing; today I am giving you someone else’s words.

This is Max’s story, shared on Social Media today by his mother, Maryann, a woman with more strength than I could ever hope for.  Like me, Maryann is committed to sharing Max’s story to raise awareness to help prevent future misdiagnosis, and to pay something forward; to make our children’s suffering at the hands of KD worthwhile.  Unlike me, Maryann’s journey ended with unimaginable heartbreak.  She has given me permission to share her post here in my blog, and I have therefore copied without edit for you to read, just as I did when I awoke to the post this morning.

Today’s blog is written in support of all the children who have suffered with this devastating illness.  It is written in memory of the Mighty Max Rocklin.

“I am only doing a condensed version of what happened last summer.  June 22, 2014 Max complained of his belly hurting around his belly button. The next day he complained of having a pain on the right side lower abdomen and started running a fever. I called his doctor and she wasn’t in. So I gave him Ibuprofen and watched him. Tuesday morning he woke up with his left hand drawn up and his face felt numb. So I took him to the first emergency room. They said he has appendicitis. They couldn’t handle that there. So he was transported by ambulance to another local hospital. They did an ultrasound of his belly. His illium, small intestines and colon was inflamed. So the surgeon there said Max needed to go to a children’s hospital. They couldn’t transport him until the next morning. So he was admitted to the hospital. They wanted to do a ct scan with conarast. So that was done. He still was running fever and hurting.
Wednesday morning Max was transported, by ambulance, to a hospital 4-5 hours from our house. The ambulance started smoking on our way there. So they had to pull off the highway. The airconditioner stopped working. They had a small fan to blow on Max. They decided to throw on the lights and sirens and speed there. We got to the hospital and saw 2 doctors. One was certain he had Crohns disease. (Max NEVER had diarrhea) They wanted to do an endoscopy and colonoscopy. So he had to drink these huge cups of myrilax. He couldn’t drink them. So they said they would have to put an NG tube down his nose into his stomach. My mom went for a walk at that time. I stayed with Max. They didn’t sedate him. I had to watch my sweet boy scream, “Help me momma!” over and over again. When they were done. I tried to comfort him. He said, “No don’t touch me.” He was upset because I couldn’t help him. That totally broke my heart. He had wires everywhere. He started having diarrhea from the myrilax. So I had to carry him to the bathroom because he was so weak. I would undo all of his wires, pick him up, carry him and pull the iv pole with us into the bathroom. I would have to sit in front of him so he could lean on me. He would hold on tight and pat my back. God I miss that sooooo much!
The doctor continued to say he had Crohns because now he had diarrhea. Um, he didn’t have it until they gave him myrilax!!! He was also tested and it came back that he had C Diff. A contagious virus that comes from dirty hospitals! So we were quarantined to the room. I had to bleach everything in the room if we touched it. Mom and I could leave the room as long as we had gloves and a gown on. This was for almost an entire week. I think it was Thursday that they did  the endoscopy and colonoscopy. Nothing showed Crohns! By this time Max had bright red eyes, a rash from head to toe, red spots under the skin on his palms and feet, feet, legs and abdomen swollen, his feet were peeling, his fingers were peeling and his pinky nail was coming off.I argued with so many doctors, interns, nurses, etc. NO ONE would listen to me! They always had an aswer to why these things were happening. His white blood count was through the roof!!! He had chest pain several times. They would just give him more morophine.
He was on Iv’s, morophine, vancomyacin, ibuprofen, benadryl, etc. By July 3, 2014 they said he could go home because his white blood count was down. So after 9 days in the hospital they were sending him home with antibiotics.My thinking was his blood work looks better so let’s take him home. Sometimes people get better at home. On July 4 Max got his bunny we promised him in the hospital. He was still so sick. So he slept with us. He lost 7 lbs in the hospital so he looked so sick. I started him on pediasure and fed him whatever he wanted. He started looking so much better.
July 12 he wanted to play outside for a few minutes. So we said ok because he was doing so much better. About 15 later he came in with chest pain. It didn’t get better so we took him to the emergency room. They said he needed an echocardiogram but couldn’t do it because he was a child!! The doctor said it was probably just indigestion from the prednisone. But the same doctor wrote the word Kawasaki across the top of the dicharge papers. We were sent home. I called the dr 4-5 hours away. She said to give him tums. He started feeling better. The next day he was going down hill. So back to the ER. The doctor said we had to get Max back to the hospital 4-5 hours away. So we waited for several hours for transport. We got the same ambulance with no air. We got to the hosptal at 1:00 am. So Max and I got in his room and we laid down. July 14 he had an echocardiogram. I thought there would be nothing. But the cardiologist had this horrible look on his face. He told me that Max had 4 aneurysms in his heart.1 normal size, 2 medium and 1 was the biggest they had ever seen in a child. He also had a blood clot to the main artery of his heart. The room spun, my chest was pounding, I kept thinking, “NO you are wrong!” I didn’t let Max see me upset. The cardiologist said, “Max has Kawasaki Disease.” What? I had never in my life heard of something like this. Why wasn’t my son diagnosed sooner? So 22 days after he started getting sick he was finally diagnosed. I called my mom, dad and husband to get to the hospital. The doctor was talking with a specialist in San Diego. They wanted to transport him in a private medical jet to San Diego. But they couldn’t because of the blood clot in his heart. He was put in ICU.  So they gave him coumadin to try to break it up. So the coumadin caused Max to have 4 hour nose bleeds. So iv #4 was put in to give him blood. His veins were so weird that the pic team had a hard time getting a vein. He would scream and cry when they would just flush them. He had 2 iv’s in each arm. I would have him look into momma’s eye and count with me. It would calm him down.
Tuesday July 15 Max got really scared. He said he saw glitter all over the room. All over Stephen and I. We figured that it was angels visiting him. At this point I still didn’t have it in my head that my baby could die. He kept having nose bleeds. But he was a little better. He wouldn’t eat or drink much.
Wednesday July 16 he wanted Chick Fil A. So my dad and Stephen went to get him some. He took just a couple bites. He played on his ipad and listened to music. Stephen and I wanted to take a shower. So we wentback to my parents hotel while they stayed with Max. I had a horrible feeling. I told Stephen we had to hurry.We saw Dunkin Donuts on the way back so we got him 6 donuts! He was asleep when we got back. My dad said he had a nose bleed the entire time we were gone. My parents went back to their hotel. Stephen went to lay down so he could sleep while I stayed up with Max. The ICU nurse came in and said Max needed some meds. So I first took some pictures of him sleeping because he was so stinkin cute. Then I woke him up. He took his medicine. I sat him up in the bed and told him I had a surprise for him. I put the donut box on his lap. He smiled the prettiest smile ever!! He took a bite and said, “How many can I have?” I told him all of thim if he wanted. About half way through his first donut (he still had a bite in his mouth) he looked up at me and said, “I’m tired momma.” I said, “I know baby. It’s ok. I love you.” He layed back and went into a severe seizure. I yelled for help. I watched my precious boy ball up. I watched his eyes roll in the back of his head. I watched him twitching around. I saw him take his last breath. The nurses started cpr right away. I called my mom yelling, “He’s gone. My baby is gone!!” Stephen woke up to the yelling. The icu room filled up quickly. They made a line between us and Max so they could take turns doing cpr. I could still see my baby. I watched them intubate him and his loose toothe fell out. I don’t remember parts of that moment. I was told that I prayed so loud they could hear me throughout icu and the waiting room. I begged God to perform a miracle! I begged God to take me instead! I begged and begged to give me my baby! I prayed for everyone who was touching my son to see a miracle in all of this. I remember bartering with God. I remember hearing the doctor shout out orders to everyone. A surgeon came in and said they needed to do open heart surgery. I signed the paper and thought they would take him to the OR. No….they did it right in the ICU room with us there. They tried to make a wall between us and him but I saw what they were doing to my baby. At 11:55 pm a lady came over and said the machine was breathing for him. “There is nothing else we can do.” So Stephen told them to stop. I sat there in complete shock. It felt like a horrible nightmare. They cleaned Max up and wrapped him in a white sheet. They handed him to my dad and my dad handed him to me. He was so warm. How could he be gone? I felt his chest….no heart beat. I tried moving him thinking he would wake up. He didn’t. I could see his beautiful blue eyes. I rubbed my hands through his hair, counted the freckles on his face, felt his nose, eyes, lips cheeks, ears, hands, fingers, arms, feet, toes legs and whatever I could. I held him until he was ice cold. Then Stephen got to hold him. I saw that Max’s face was dirty so, like all mothers do, I licked my finger and cleaned his face. We had to go. So my dad took Max and placed him back on the table. I kissed him so many times. I didn’t know how to leave without my son. I am a VERY protective mom! I wanted to stay with him and make sure he was being treated good. But I had to leave the hospital without my baby boy. I didn’t know how long it would be until I saw him again. We had a 5 hour ride home.
I had to call Stevie to tell him his baby brother died. Call Red Cross to get Stevie a flight home. Stevie had to get a loan to fly home. Red Cross doesn’t pay for them any more. I slept the rest of the way home. When we got home we had to tell Nick and Corey. I hate that my boys had to go through all of that pain!!!
Maxwell Joseph Rocklin passed away on July 16, 2014 just 5 days before his 8th birthday.
Max was the funniest, cutest, smartest, toughest, loving, caring, giving, beautiful and handsome little Super Hero. He may have been littlle but he is MIGHTY!
His funeral was the day before his birthday. I wanted it to be a child’s funeral. So in the plants and flowers were Super heros.There were balloons. Some friends made super hero posters with Max’s pictures all over them. They also made superhero pins. We wore super hero tshirts. The night of his viewing a dear friend and his son dressed up at super heros. The day of his funeral my cousin’s husband dressed up as a super hero. The funeral home was packed full. I had several dear friends sing for Max. Rev Christ Turner did an amazing job also. I was in such a daze. I don’t remember the faces of everyone there. I just wanted to be with Max. I wanted to constantly rub my hands through his hair, kiss him, and tried to hug him. I knew those were the last moments I would ever see my baby boy on this Earth again!
Since Max’s passing we have recieved so much love and support. I can’t name everyone and everything they have done. Literally there is hundreds of people that have been here for our family! Max is loved by so many! He made me so proud of him. The selfish part of me wants him back no matter what. But if Max had lived he would not have been able to be a regular little boy. He couldn’t over exert himself, had to wear shoes even in the house, one little cut he could have bled to death (From the coumadin), he would have to stay away from anyone who was sick. I forgot to add that Max had several heart attacks while in the hospital and at home. He would just say his chest hurt. They never did an xray or anything the first week he was in the hospital. Max has saved so many lives since he has gone to Heaven. I prayed for a miracle and for Max to be healed. This was not the miracle or healing I wanted. But it is what God knew Max needed. Believe me that is hard to say. I love Max so much that I am thankful he is no longer in pain. But I want to hold my sweet boy. I want to hug him. I want to be his mommy. I always will be. But not the way I want to.”
I would like to thank Maryann for allowing me to share her incredibly sad story.  My heart has known the pain that this disease can cause, but my heart will heal with every breath that my daughter takes.  There will never be enough words to express my sadness that Kawasaki Disease took her son from this world, or any of the other children who lost their battle.  What I do know is that stories like these will serve to ensure that I do not allow myself to take one second of this life with our daughter (and her siblings) for granted.
And every month, on the 16th, I will try to remember to pay it forward for Mighty Max.
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Top Left: Maryann created a banner bearing the names of all of our children, with the top spot proudly bearing her son’s name Top Right: You can make out Freya’s name on the banner Bottom: Max lost his battle with Kawasaki Disease on the 16th July 2014. On the 16th of every month his family ask that you take a moment to pay it forward – do something nice to brighten someone’s day, in honour of the Mighty Max

Flashbacks and Intrusive Memories

Posted on by Bluemama

As we move further away from the traumatic experience we had with Freya during the acute phase of her illness, it seems that I become more and more affected by what we went through.  If you’ve been reading my blog you will know that I recently received a loose diagnosis of PTSD, and am about to embark on treatment for that.  I was given a choice in relation to the treatment that I wanted, based on which element of my current state of mind that I wanted to tackle.  I can have talking therapy to help me get out all of my thoughts and feelings, or I can have specific behavioural therapy and EMDR to deal with the flashbacks.  I still don’t think I really know what route I want to take; I think I’d like to have the opportunity to do both.  We will have to see about that at my next appointment, I guess.

I’ve had a week or so of feeling pretty positive about life in general, getting to grips with the Christmas shopping and starting to look forward to the festive season, but at around 4am this morning, my happiness was rudely interrupted by memories of darker days.  But what is a flashback?  And what makes it more than just a bad memory or an intrusive thought?  I experience all three of those things, and I’m starting to recognise the difference.

Freya awoke at around 3am this morning, which is unusual for her as she usually sleeps through without a whimper until about 7:30am.  Some would say we are lucky it is unusual – the problem with that though, is that I’m just not prepared for it and don’t really know what to do when it happens.  Do we ignore, and hope she goes back off to sleep?  Should I change her nappy? Feed her? Take her into our bed?  I chose to change her nappy, and cuddle up with her in my bed in the hope that she would fall back to sleep.  After about an hour of convincing herself that 3am was the new playtime, Freya yawned! I seized the moment, and placed her back in her sleeping bag in her cot, which is still by the side of my bed (I haven’t quite reached the point where I am ready to put her in her own room).  Despite it being an unearthly hour, I switched on the butterfly that casts stars across the ceiling, and squeezed the tummy of the seahorse that would hopefully sing her to sleep.

And then it happened.

Lying there in the dark, with the outline of her cot just visible in the moonlight and that seahorse playing all too familiar lullabies, I was engulfed by a wave of nausea, and I felt the wetness of tears rolling down the side of my face before I had time to realise that I was crying.  My throat closed up, and I felt that my breath was caught somewhere in between my stomach and my lungs, and I thought I might actually be sick.  Suddenly, I wasn’t in my room anymore.  I was in a hospital cubicle. Cold under the hospital-issue blankets, I pulled them up under my chin and shivered.  Freya was wearing just a nappy and she was so, so hot.  She lay in a nest of blankets made both to make her feel secure, and to stop her from sliding down the cot which was raised at one end.  She hadn’t needed anything to soothe her at home; all she needed was me.  In here it felt like she needed something of her own that she could become familiar with, and so I had instructed her Daddy to buy the pink seahorse on the way to visit at the hospital one morning, and at every nap time and bedtime it’s little tummy would get a squeeze and soothing melodies mixed with sounds of the sea would pour out as it glowed reassuringly in the darkness.

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She’s gasping for air, but she won’t open her mouth. She looks like she is drowning.  Open your mouth sweetie, open your mouth.  I panic, jump up, hit the red button, a nurse appears.  A face mask is fitted, attached to a saline nebuliser to help clear Freya’s nasal passages, and she settles down.

I don’t want to wake up.  I don’t want to wake up because I am convinced I am going to see her there, looking at me with a faraway stare, lost and frightened and too sick to smile. I don’t want to wake up, because I know it won’t be long before they come to take more blood and she will cry until they’ve squeezed enough to fill 4 vials out of her little heel.  I don’t want to wake up because today I will be too scared to pick her up in case I upset the cannula in her  head, or her wrists, or her feet.  I don’t want to wake up because we will be alone and scared.

I wake up.  She’s crying.  That’s unusual for Freya; we are usually woken by beaming smiles and sounds resembling a bright “Hiya!” from her cot. I open one eye, she sees me.  She smiles.  She is snug in her sleeping bag, pink from the warmth and she looks at me with sparkling eyes.  Eyes that say, “We’re home mummy, we’re okay.”

How do I feel?

Posted on by Bluemama

“So, what brings you to us today?”

There it is, the dreaded question.  The question that you know is going to be the first one they ask, so you rehearse it over and over while you’re sat in the waiting room.  The question that, when it actually comes out of the mouth of a psychotherapist, is most often met with a blank silence, and lots of tears.  It’s a funny question to ask I think (funny odd, not funny haha). I mean, where on earth do you start?  The relief of actually being in front of someone who is not only qualified to ask these questions, but might actually know how to help you deal with the answers, has always resulted in me falling apart right in front of them.  The same can be said of this morning.

I felt sick to my stomach this morning, and a couple of times I thought I might actually run.  But then they called my name, so I had to see it through.  These things can go many ways; a lot depends on who the person on the other side of the door is.  I’ve been known to go for help (yes, I’ve been here before, well kind of – I’ll explain later), and clam up the moment they’ve opened their mouth. “Yes, I’m fine.  In fact, I’m not really sure why I’m here.  I’ve been feeling much better lately…”  Mostly they are the kinds of people that are experienced in getting people to talk, and are warm and welcoming, and I spill the beans before my backside has even met the chair.

Today was like that.  I was introduced to a trainee psychotherapist who would be responsible for carrying out my assessment.  i did feel immediately at ease with both her and the psychotherapist present and was able to articulate how I felt to a degree.  I answered that question, after a pause and a moment to catch my breath and stem the tears, that I was struggling to come to terms with a situation that I found myself in.  I explained that I felt an incredible sense of sadness that our child was struck by this devastating illness, after just seven weeks of normal.  I explained that I felt afraid that I loved Freya too much, and that every time I felt positive about the prognosis I was overwhelmed by the fear that the rug could be pulled out from under my feet.  I explained that I felt angry at the world for not understanding how much this has impacted on our lives, and that I had considered taking myself and my daughter far enough away from all of this to convince me that it never happened.

After a considerable length of time where I switched between a mother unable to speak through the tears as I recounted some of the experiences that you will have read about if you follow this blog or the Facebook page, to a sensible, level-headed woman who could describe the illness and its effects with the knowledge of a medical professional, a conclusion was reached. I am not depressed.  I knew that.  I have suffered with depression in many forms in the last 11 years, and I knew that what I was feeling was not the same.  It’s one of the reasons why I have struggled on alone for so long; I didn’t have an appropriate label for what I was experiencing.  I don’t display the classic symptoms of someone with depression.  I enjoy my life and know that I have a lot to live for.  I don’t avoid people or situations, in fact I look forward to human interaction and an opportunity to escape, let my hair down, mingle with my peers.  I took part in a hen party this weekend, which I thoroughly enjoyed (apart from the bit where I cried myself to sleep looking at a picture of my precious Peanut).  Some of the old familiar thoughts have been creeping in; I text her ages ago, why hasn’t she responded? She has probably had enough of me/isn’t interested/doesn’t care/doesn’t want to be friends with me anymore.  But I’ve managed to ‘have a word with myself’ and been rewarded by a late response and an explanation that allayed my fears, and reaffirmed my common sense.  I get up every morning, shower, make myself look presentable (cue the school mums saying “Seriously! She thinks that is presentable!!”), I have my nails done, I buy nice clothes. I am still interested in my outward appearance, and take care of myself.

However, I experience anxiety like I have never known before.  Full blown panic attacks where I feel like I am being strangled, and my body wants to sink into a puddle on the floor.  Real, deep sadness that takes my breath away.  Intrusive thoughts that threaten every moment of happiness that I dare myself to have.  Confusion, anger, hatred, irritation.  I shout at my husband and the kids like an old fish wife at times; I have no patience.  I want to lock myself in a room for a week, or more, and shout, kick, scream, punch some walls; let the emotion of the last 6 months escape from me in one tremendous fight against myself and the world.

See, I’ve written my blog.  Every time I have feelings I need to share, I take to my Mac and write.  I don’t think about it, my words are not considered.  I sit and write whatever my fingers choose to type, and Prosecco-fuelled as I am now, it just comes out, unconsidered, but raw and real.  I thought it would help, that writing would be therapy.  It has a little, but not a lot.  I feel like the words have to be spoken, aloud, to someone who hasn’t shared this journey with me, to someone who hasn’t had their own journey to contend with, to someone who doesn’t have an opinion on what I should think or feel.  To someone who doesn’t wonder what all the fuss is about (you know who you are!).  And I do not want the rest of my life or hers to be defined by the bastard that is Kawasaki Disease.  It has already taken enough from us.  And right now, Freya doesn’t notice that there are tears behind every smile, but it won’t be long before she does notice.  “Why are you sad, Mummy?” These are not words I ever want to hear come from that sweet little mouth.  But they will, if I don’t take control.  And I don’t want Freya to grow up scared of this world she lives in, scared of her own strength, frightened to fall or take chances.  I want her to live, and love life.  How can she do that if I put her to bed every night afraid that she won’t wake up the next morning?

The psychotherapist admitted that the low intensity treatment they offer is not what I need.  It is likely that I am suffering from post-traumatic stress disorder (PTSD) and am being referred for appropriate treatment.  I have a number of choices ahead of me.  I need to choose the treatment that will benefit me and my family the most.  I can be treated for PTSD with cognitive behavioural therapy (CBT) and eye movement desensitisation and reprocessing (EMDR), which are standard treatments.  Or I can have talking therapy that will allow me to say aloud all the things I have kept inside of me for these past few months.  Both would benefit me.  I think the most important thing for me to deal with right now are the symptoms of PTSD.  I need to rid myself of the anxiety, and be able to walk into our local hospital without it having a physical and debilitating effect on me.  I need to get some sleep; stop staying up until 3am to limit the number of hours that I am not alert to Freya or aware of her nearness.  And I need to erase the flashbacks, because those are the most distressing of all.  I have lived through these things once, re-living them every day against my will is making me unwell.  I will never forget some of those moments, nor do I want to; those moments are what will ensure I never take a moment with Freya for granted.  But I don’t want to see them played out in my mind like a DVD on a loop every day of my life.  Those memories are stopping me from moving on, and from seeing the beauty of life that is in front of me.  And I want to move on more than anything.

Forever changed…?

Posted on by Bluemama

I often find myself wondering if we could cheat this thing, Peanut.  You know, change the past by putting some distance between you and the place where all of this happened.  Get in the car and drive, just drive, as far away from here as we can get on a tank of diesel.  Far away enough to escape the darkness that threatens to steal the sunshine from our lives.  

 These past few days I have been taunted by intrusive thoughts.  I have a ‘friend’ called Ant* who used to hang around a lot, whispering negative thoughts in my ear whenever I tried to look on the bright side.  It seems these days she’s been inviting a whole bunch of pals round to join in, and they fill every space in thought that I have. Last night, as I laid you down to sleep, I was hit by a thought; “What if this is the last time I put you to bed?”  I don’t even know where it came from, I mean I don’t feel like you are in the danger zone anymore. Do I? To be honest, I don’t really know what I know anymore.  Before the appointment in Doncaster last week, I had reached a point where I felt things were stable, and that we were out of the woods.  Having to relive it all again to a new Doctor has knocked me sideways, and I feel confused and unsure and alone again.

These days my mind is never quiet.  I have to keep myself busy just to drown out the noise.  Today as we drove home from the Children’s Hospital my mind started to wander and I thought about how much I love you.  It’s crazy just how much, sweetheart.  It’s not even healthy.  I mean, of course loving you is a good thing, but when every thought of how much I love you is met with a thought about how devastated I would be if anything were to happen to you… God, I wish I could just love you without the fear.

As that last thought entered my head, I actually shouted aloud to the cloudless grey sky, “DON’T YOU DARE DO IT, DON’T YOU DARE!”  I’m not even sure if I know who I was daring.  God I guess.  I was challenging him, without any clue how I was going to punish him if he chose to ignore my threat.  What could I do?  What power do I have to protect you?  I just wish someone could tell me that things are going to work out, that you will recover completely and this nightmare will become a distant memory.  I don’t want to feel sad every time I think about what you might sound like when you talk, or when you will crawl, or what you will be when you grow up.  I want to be able to think about your future without being checked by the voice in my head that warns me not to tempt fate.

I was jolted out of my thoughts by the beeping of a car horn.  To the impatient lady at the wheel of the Mini behind me: We don’t care much about your beeping horn.  How nice to live in a world that you feel you can rush through.  I personally have no desire to rush through this life.  This precious life.  So beep away, lady, and know that you will not move me today or any other day. Nor shall you induce me to hurry for your convenience, for right now I am sharing the air in my Vauxhall Astra with the most precious thing I have in my life.

There is a quote that does the rounds from time to time about being kind to others, because you never know what troubles people are dealing with.  I will try to remember that, and be more tolerant of others.  Mini lady achieved a whole car’s advantage on me.  Was it worth it to steal a precious moment?

I feel like I am in purgatory.  Stuck in hellish flashbacks of the worst time of our lives, but without the Utopian promise of a life no longer touched by Kawasaki Disease.  I’m not sure how much sadness I can take.  I had you sweet and perfect and just as I made you, for seven weeks.  Seven weeks.  Now tears are streaming down my cheeks as I silently scream, “WHY?!!”  Why, Peanut? Why you? Why us?  Why did they have to ruin everything?  I am afraid that I will never be the same again.

On Friday I will have my first counselling session to try to help me come to terms with what has passed, and what might be in our future.  I have so much I need to say, out loud.  I’m frightened that once I open the floodgates to the emotions inside me, that I will not be able to close them back up.  And I’ll only have an hour.

*reference earlier blogs – ANT = Automatic Negative Thoughts.  “Ant” is the personification of my negative thoughts and feelings

A post too late 

Posted on by Bluemama

So as today’s cardiology follow-up appointment managed to strip away any joy I might have started to feel, I realise that I missed an opportunity to blog about something great that happened just days before and I’ve let that greatness get swallowed up by the events of today.  And so I’m going to get the crappy stuff out of the way, and then I’m going to attempt to undo the feelings I have been left with by taking myself back to the weekend when great things happened.

The crap bit

Today we had our first cardiology follow-up appointment at our local hospital. Up to now, all of Freya’s cardiology concerns have been taken care of at Leeds General Infirmary. It is an amazing hospital, and although it was there that I was delivered some devastating blows, I associate them with common sense, and with the treatment that has helped to get Freya where she is today.

At our last appointment, in September, Freya’s Cardiologist was sufficiently satisfied with her progress that she felt it would be appropriate to refer us to our local hospital to make things easier for us in terms of travelling. I wasn’t concerned about the travel, but the Dr thought it made sense and who was I to argue? When the local appointment came through I must admit I felt more than a little trepidation. I had built a lot of trust in the Leeds doctors and believed that Freya was in good hands. Even the facility itself feels right. Clean and clinical, but with special touches that make it feel like a good place to be with your child. The staff are friendly and welcoming and seem intent on making the experience for both the child and the parent as painless as possible.

On the other hand, I associate our local hospital with confusion and pain. With anger at not reaching a diagnosis. With sadness of memories of holding onto the bars of a cot as I watched my lifeless daughter receive fluid resuscitation.  Of despair and fear of watching my child slip away from me without ever knowing the cause. It’s where they told me Freya was a 10 on a scale where 11 was dead.

If you’ve followed my blogs, then you might remember it is the place where I experienced my first ever anxiety attack. A sudden onset of emotion, an inability to breathe, a choking sensation and a desire to slide down the wall into a heap on the floor and cry myself a river.

That’s where we went today. We arrived, on schedule, at 12pm for Freya’s 12:15 appointment. She was weighed and measured, and we were asked to wait in the waiting room. We did as we were asked, and waited. And waited. And waited. Two hours later we were finally called. I am grateful to Freya for being such an insanely content and happy baby for that two hour wait because whilst it felt like an age, it wasn’t half as unbearable as it might have been. Apart from the anxiety that was building as we got closer to school pick-up time and the car parking time limit.

We spent an hour with the Dr who turned out to be a paediatrician with cardiology specialism who by her own admission was not the right person to handle Freya’s case. She explained the three tiers of NHS care – primary (GP), secondary (paediatrician) and tertiary (consultant specialists). She felt that Freya’s case should be handled by the tertiary level and as such our former care was more appropriate.  As a result, although I came away with the reassurance of a ‘no change’ echo, I gained very little else except more stress and another change as we are to be referred to yet another medical professional. Cue meltdown in the baby change room as I called the school to tell them I wouldn’t be there to collect my son in time.

It’s been what I would call a ‘meh’ kind of day. I’ve been left with some of the doctors words ringing in my ears. Words I had started to forget about. Risks. Rupture. Stenosis. Myocardial Infarction. A statement that Freya will continue to be followed up into adulthood and that the risks associated with this disease will not be known until later in life. It’s like a noose around my neck.

How the hell do I come back from that?

Well, I can focus on the positives. Freya was not phased by today. She remained her usual, happy self. She gave the doctor a run for her money with the echo, grabbing the probe and trying to eat the wires! And she practically butt-hopped her way off the bed when she was meant to be lying still for her ECG. The result was a good one (not ‘good’ good, but better than bad). The doctor was gracious enough to admit that Freya needed more appropriate care and to make the referral. We got a new prescription for an increased dose of aspirin, and a promise of the letter that might just finally bring aspiringate to an end.

Small victories for battles we shouldn’t be fighting, but victories nonetheless (even as I type I’m unconvinced that I’m not just clutching at positive straws here).

So what was great then?

What was great was the weekend that preceded this crappy day.  This weekend I traveled with my little family to a little place called Liverpool (or more accurately, The Wirral) to meet my kawabuddy.  A woman I had never met, and had never exchanged a word with. A woman with whom I have communicated by text every single day for the last few months.

That woman is Charlie’s mum. Charlie was diagnosed with Kawasaki Disease around the same age as Freya, a number of weeks after we were dealt the blow. We came across each other through one of the Facebook support groups and with our KD journeys being so similar we were drawn to each other for support. Babies as young as ours just didn’t seem to feature in any of the circles we looked to for support, and so we were there for each other. After the initial trauma of the situations we were faced with, we quickly realised we shared lots of things; we have the same sense of humour, we think the same things, sometimes say the same things; we are the same person (that one’s for you sexy Jo 😂😂😂)

Anyway, she told me a while ago that she was going to hold a ‘trick or treat’ event for Halloween to raise funds for Hospital at Home, an organisation that administer medical treatment to children in their own homes to allow parents to be parents. When I first saw the event on Facebook I wondered why she added me. So I asked; “Did you add me to show me what you are doing, or because you want me to come?” You already know how that turned out!

So I went. My husband and I and the 3 kiddiewinks went on a roadtrip to help support my new found friend in her attempt to ‘pay it forward’. She hoped to raise a few hundred pounds. She raised over £1400!

Of course I was anxious about meeting Jo, but I was also anxious to meet her. I was worried we wouldn’t like each other in person, but deep down I knew that couldn’t be possible. I was worried that if we didn’t connect in person like we had over thousands of text messages that we would lose what we had. That the support we had given each other would disappear now that it was more tangible than ever.

My worries (and no doubt hers) were unfounded. Luckily I’ve gained a new confidence in taking the plunge and doing things I might have previously shyed away from. I mean, life’s too short isn’t it 😏. So I didn’t have any expectations of the evening, and I certainly didn’t want her to feel like she had to babysit me and my family when she was hosting the event. But we managed to get a few minutes here and there to chat and it was easy. Just easy. So we arranged to spend a few hours together the following day, before we made the 3-hour journey back home.

I will always remember that Sunday as a special day on this journey.  The day that two families, strangers to all intents and purposes, spent some of the easiest hours I’ve spent, walking, talking and watching our kids play like they had grown up together. Often Jo and I would stop and turn around to realise that we had left our husbands and children way off in the distance whilst we said all the things we’ve ‘said’ before (via text) but with the added feeling of closeness that came from sharing this ordeal, in person, with someone who understands it. Really understands it.

And of course, Freya met Charlie 💙💖.

This blog could never explain the bond that has grown between two women that are inextricably linked by an experience that we wouldn’t  wish upon our worst enemies. We have cried together and laughed together. We have been angry, and sad, confused and concerned. We have been tired, yet stayed up all night chatting and researching. And we’ve been fed up, I mean completely and utterly fed up, but managed to leave each other chuckling in the face of this godawful bastard of a disease.

Wherever this takes us, I will always be thankful for finding a likeminded person to share this with.  Remembering that is what makes this crap day great again.

A new perspective

Posted on by Bluemama

These last few months have been some of the toughest I have ever had to face, and I have experienced a whole plethora of emotions from sadness to anger, and every feeling in between.  I have even experienced grief, which was a particularly hard thing for me to deal with as it has been well over 20 years since I lost someone dear to me.  And I know that Freya is still here, very much alive, but I grieved in anticipation of the possibility of loss, and I grieve still for the loss of her healthy heart.

Kawasaki Disease doesn’t rule my life quite as much as it has done over the last few months.  I still dedicate a lot of time and effort to making sure Freya is receiving the best possible care, but mainly to satisfy myself that I understand the care she is getting because that’s the way I am.  I’ve never been one to accept something just because someone tells me that’s how it is.  I like to be fully informed, and I like to question the ins and outs until I am comfortable that information and decisions are accurate because I know that people don’t always get it right.  Not even me, haha! No, Kawasaki Disease has started to take a back seat to normality as we get on with being a family again.

One of the things that has niggled me the most is the notion that the hospitals took too long to diagnose Freya’s condition.  I have at times been angry and judgemental about the fact that they were unable to reach a diagnosis within the ‘safe’ window, and that it was too late by the time they worked it out.  After our stay in Leeds, where I had the worst day of my life (reference Freya’s Story (11)), I returned to Sheffield Children’s Hospital angry and bitter.  I felt that Freya’s doctors had failed to prepare me for what was about to unfold, and accused them of sending me to Leeds like a lamb to the slaughter.  I had not imagined that my worst fears were about to become a reality; up to that point I believed that my negative thinking was going to prove unfounded.  Both the Rheumatology Consultant and the Immunologist came to see me when they heard that I had questions, and I asked them pointedly “Thirteen days?! Why did it take you so long?”  I remember thinking that I could read the hurt in their eyes, and could see that they were genuinely upset that I had questioned them.  I do believe that they worked incredibly hard to do the best they could for Freya, and that they were almost as saddened by the outcome as I was when the echocardiogram confirmed that she had indeed been fighting KD.

It is easy when you are in a particularly black moment to want to hit out at those around you, and I very quickly forgot what I had seen from them in the days that Freya was in their care. Looking back now, it was really no time at all.  Sheffield reached a diagnosis within 5 days of receiving Freya onto the ward, and during those 5 days I could see that they worked tirelessly to try to fathom out what was making my baby so sick.  And they were brilliant at keeping me informed. I had not expected to see the Consultants very often during our stay, but there wasn’t a day that passed (well, weekends maybe) that we didn’t see one or more of them, sometimes more than once.  The Immunology Consultant was one of the most warm women I have had the pleasure to meet, and I always felt that Freya had touched her heart in some way.  She would come and sit next to me on the fold away bed, sometimes holding my hand when she had to discuss something difficult,  like the bone marrow procedure.  The Rheumatology Consultant and the SHO that we often saw would come into our cubicle and talk us through their thought processes and plans, and I always felt that it was a collaborative process.

Amidst all the researching and fighting of the past 4 months, I have always felt that there was still a reason to be thankful.  I have to remember that I took Freya to A&E at the very first sign of a temperature; she had no other symptoms of KD and would continue to hide those from the doctors for a number of days.  It seemed like a long time in comparison to other KD stories, but most of those didn’t take their child to the hospital on day 1.  There was so much luck involved in Freya’s story – had she been a week older, I would have begun to treat her fever with paracetamol at home instead of taking her to the hospital.  Had she developed a fever one day later, on the Monday, I would have taken her to my GP and probably would have been sent home with “just a virus”.  Had the Immunologist not asked for an opinion from Rheumatology, Freya would never have had that second echo.  Had Freya not developed that angry rash on day 11, the Rheumatologist would never have been called.  It’s like the doctor said, in the end “Freya showed [them] the way.”

Last week, at Freya’s follow-up appointment in Sheffield, I thanked the doctor for everything they did for her.  I said that whilst I would probably always wonder if there was anything they could have done to diagnose her sooner and whether her heart would have suffered if they had, I had nothing but gratitude for them for the way they aggressively treated the condition once they reached a conclusion.  They were as relentless as the disease itself, and had entered a battle that they were determined to win.  And they did win.  Because even though Freya has suffered complications with an unknown longevity, they stopped Kawasaki Disease in its tracks when it was intent on causing further damage.  I know that they did more than was necessary, carrying out daily echocardiograms even though the likelihood of a day-to-day change was small.   They often said that they thought some of what they were doing was “overkill”, but I know they did that because they wanted a positive outcome for Freya.

It has taken me a long time to stop trying to find a door to place my blame at.  That blame landed well and truly at my own front door in the beginning, and there is still part of me that wishes I could have made her strong enough to have avoided this disease.  I often feel like I failed her in that respect.  I don’t feel the need to blame so much anymore, and whilst it has been a slow process I do believe I have found my peace with this situation sooner than most.  Don’t get me wrong, I still believe there is more to be done to make the diagnosis of Kawasaki Disease more successful.  I still think it is a travesty that this disease can have such a huge impact on a child, and yet parents and medical professionals alike are unaware of its existence.  I still think that it is appalling that mums like me have to spend so much time and energy reading documents that may as well be written in Swahili, and trying to separate the wheat from the chaff of internet searches.  Let’s face it, mums have plenty of other things to be getting on with.  But, I do feel that I have a stronger appreciation of the medical profession and as a result I understand why our children are so difficult to diagnose.  So what brought about this catharsis?  It was in fact a letter that was delivered to me via Ed Miliband MP, whom I wrote to airing my frustrations as a parent of a child with this rare disease.

When I received the letter yesterday, I was anxious to pour over its contents.  On first reading, however, I was angered and frustrated.  He had written to the Secretary of State for Health (Jeremy Hunt) asking for his response to my concerns, and enclosed a copy of the response he received.  It appeared to be, on the face of it, a justification of my perceived failings of the NHS, “…challenge for GPs..”, “…6000 rare diseases..”, “…not possible to be an expert in all of them..” In all honesty, when I read the letter yesterday I was all fired up to write a pretty curt reply.  And then I remembered something that an old manager once told me; if you are angry, don’t respond, sleep on it and respond later.  So I read the letter again a few hours later and it was like some of the clouds that occupy my mind began to disperse.

What the Rt Hon Jeremy Hunt MP was actually saying was that we have to appreciate that with over 6000 rare diseases to consider, and particularly with Kawasaki Disease affecting only around 8 in 100,000 children each year, it is unreasonable to expect every GP to immediately diagnose a child presenting symptoms.  You think that doctors are trained to handle every medical eventuality, but it is like anything in life – no-one knows everything about everything.  Why, even in my field I would say that customer service advisors cannot be expected to answer every customer query that reaches their ear.  All we can do is equip them with the tools to provide the best possible solution.  Sure, there will be common questions that arise that even the worst advisor could answer with their eyes closed, but for every 100 simple questions that come along, there will always be one, a little more obscure, that needs closer attention, perhaps even a second opinion.  Why couldn’t I apply the same common sense to the medical profession?  I guess because they are dealing in life and death, so you expect more from them to know everything.  But how many times have you been to the doctor when they’ve had to use Google, or refer to a medical handbook?  Doctors are incredibly clever people; they are not geniuses with greater memory capacity than you or I.

The MP went on to provide information about the steps that have been taken to support medical practitioners in the diagnosis of rare diseases.  One of the resources he drew my attention to is a number of videos that have been produced by Health Education England, “in collaboration with the Department of Health, rare disease charities, patient groups and clinicians”.  One of the videos is called “Rare Disease: The GP’s Role” and has helped to give me some grounding in this whole thing (you can view it at https://www.genomicseducation.hee.nhs.uk/resources/videos).  The NHS appreciate the challenges surrounding the diagnosis and treatment of rare diseases, like Kawasaki’s.  Yes, more needs to be done to inject funds into research projects, but who am I to say that Kawasaki Disease needs more attention than the other 5999 rare diseases in the mix?  I know I run the risk of sparking political debate about government spending and the like, but I don’t claim to understand that in any detail, and I am sure that the solution isn’t quite as easy as we all might think.  And if being a Doctor was easy, we could all be one, couldn’t we?  I already feel like I’ve qualified with a degree in KD!

The videos that I watched with interest discuss genomics, a discipline in medicine concerned with DNA mapping (in simple terms!) There are currently 11 genomic medicine centres in the UK who are part of the 100,000 Genomes Project whose role it is to participate in “sequencing 100000 DNA codes of patients, leading to better, earlier diagnosis and personalised care, for cancer, rare diseases and infectious diseases” (https://www.genomicsengland.co.uk).  I was pleased to see Imperial College London on that list, and proud that my family has played our part in the study to understand the genetic determinants of Kawasaki Disease.  I was pleased to hear, in the letter, that “The Rare Diseases Advisory Group…is considering a proposed way forward on an approach to earlier diagnosis, which will be developed with the medical Royal Colleges.”  So, work is being undertaken behind the scenes to try to deal with this disease more effectively, and a Professor leading one of these research projects in London recently told me himself that they were about to publish a paper which proposes a diagnostic test for Kawasaki Disease.

As well as this, the MP went on to tell me about the NICE Guidelines that are in place for the treatment of children presenting persistent fevers (“Feverish illness in children: Assessment and initial management in children younger than 5 years”) which “provides advice in relation to the diagnosis of Kawasaki Disease, including details of the main symptoms…”  This information can be found on the website https://www.nice.org.uk.  I followed the flowcharts on the website and it was like watching Freya’s journey played out in a diagram! The doctors weren’t pissing in the wind (pardon the expression), guessing, or coming up with miraculous discoveries.  They were following an NHS guideline for diagnosis and treatment, and by a process of elimination were finally able to reach a diagnosis for my daughter.  Given the red herrings that Freya threw at them along the way, I am not surprised at all by the route they took, and I have a new appreciation for the process that they had to go through.  Perhaps this is common sense, and you are all saying “Well, what did you expect?!” But you know, I really didn’t expect anything other than to take my child to the hospital, for them to look at her, tell me what was wrong, treat her and send her home.  Well.  100% better. And not broken.

So what has changed for  me?  I no longer feel the need to blame anyone for what Freya went through, or for her current condition.   I feel that my respect for the medical profession in general has been restored; they can’t know everything, especially about a disease that many have probably not seen before.  I feel like I have reached a better understanding of the process that all the medical staff went through to diagnose my child.  Don’t get me wrong, there were a few ‘blips’ along the way, and I have no doubt that there will have been something that could have been done differently somewhere, but I don’t think I believe that a different course of action would have changed anything for us anymore.  Freya would still have Kawasaki Disease, she would still have received treatment and sadly because of the nature of the disease she was one of those children who was unfortunate enough to suffer heart involvement.

And what remains the same?  My determination to raise awareness of Kawasaki Disease.  My wish to see increased funding for research into the disease, whether from the NHS or public fundraising.  My commitment to use whatever spare time I have to produce information about the disease where I think it will help other parents in my position.  My passion to research and share what I can, and my appetite to challenge our Doctors to answer the unanswered questions that parents have about the disease and related issues.

I never thought I would use the word ‘lucky’ to describe our experience, but do you know what? We are lucky.  Because so many other stories have not panned out the way ours did.  Yes, Freya was critically ill, and yes she has a heart condition that will continue to worry us for an undeterminable amount of time.  I will continue to suffer anxiety when Freya screams out in her sleep like she did at 6am this morning and my first thought was is this it? And I will always wish that Kawasaki’s could have passed Freya by.  But right now, a mum is holding her child’s hand as they are put to sleep for heart surgery.  A GP is sending a child home because all they have is a virus.  A child is being pumped full of drugs that are not going to work, and will allow the disease to hide a little longer.  Right now, somewhere in the world, a parent is grieving the loss of their child to Kawasaki Disease.

 

Our broken hearts

Posted on by Bluemama

My dearest Freya

I haven’t written to you in a while, your journey has been continued through my blog and I mostly write to whoever is out there reading your story.  But today I found myself missing my imagined conversations with you and felt compelled to write.

I spend most of every day with you, my darling, and every day my love for you grows more and more.  You are an inspiration to me, and you leave me awestruck.  I cannot look at you without marvelling at how far you have come in such a short time.  On Saturday you will be 6 months old.  Just 6 months! It is hard to comprehend what you have been through, and I have to pinch myself to believe that you are still here.  And you are still here, despite this nasty disease’s best attempts to reach a less favourable outcome.  But despite the fact that you are doing so incredibly well, I cannot help the anxiety I feel for the eternity of fog that lies before us.

I read stories about KD all the time.  Every day I see comments from parents of children who have suffered, or are still suffering at the hands of this disease.  I feel the fear in their words.  Sometimes, like today, there will be a post from a parent who wants to share the news that their child, so many years after KD, has had a clear echo, or is surviving against the odds and sticking two fingers up at Kawasaki Disease.  Those stories are great, but they also act as a reminder that this never really leaves you.  There are daily posts from parents airing their concerns about the perceived after-effects of KD; behavioural problems, anxiety, joint-pain to mention just a few.  Reading those comments, I wonder what will become of you?  I don’t know if it is a blessing or a curse that you are so young?  I will never know how KD shaped your personality because you didn’t have one before it got you.  What I do know, is that it feels like I will have such a long time to wait to see the real long-term effects of the disease on your body and mind. I can be thankful that you shouldn’t feel any anxiety as a result of your illness. You have no idea how close you came to leaving us; you have already forgotten what KD did to you.  I don’t think I will ever forget.

I want to though.  I want to be able to live our lives without that dark cloud looming above our heads, threatening rain.  I want to be able to flick the switch that will stop the last few months playing over and over in my mind like a DVD on repeat.  I want to look at you and see your sweet, beautiful face looking back at me, not the lost little face that is etched in my memory.  I want to muse about the future without the niggling doubt that there might not be one.  And that’s not because I think you are going to die, because I know that you are doing really well sweetheart.  It’s just that I dare not say it out loud in case I jinx it and set in motion a whole new twist of fate.  It’s true that there is nothing certain about life, but mostly people go through life taking it for granted that it will last forever, or at least for a very long time.  Of course, a life can be taken at any time, and it wasn’t in anyone’s plan for this disease to take you when it had its strongest chance.  I had never thought about death as a real possibility before.  Now I think about it all the time.

I know it will get better.  I know that every day we move further away from the diagnosis is a day closer to healing.  And I am sure when you have had your next follow-up appointments in November I will gain some more comfort for our journey.  It seems like such a long time to wait, and I wish there were a way I could see right through your little chest into that heart of yours.  That’s the cruellest  thing about this disease.  On the outside you look like any other baby; happy and healthy, with little rolls of fat on those chubby thighs of yours, and a rosy flush to your cheeks. You can do everything you should be able to; you can roll over onto your front (mostly when I’m not watching, cheeky lady), and you chatter away all the time (this has most recently developed into a high-pitched scream whenever I am not paying you any attention!)  But in there, something is happening.  Probably good things, maybe nothing, but something.  It is completely out of my control, and is a constant threat and source of anxiety for me.

One day we will sit and chat about all of this, and you will laugh and tell me how silly I was to worry (don’t tempt fate, don’t tempt fate).  Oh sweetheart, I am sorry for writing in such a negative way.  I ought to be telling you how strong you are, and how great your life is going to be.

I went to see my doctor today.  You came too.  I was hoping you would stay asleep so I could keep you in the car seat with the rain cover on, acting like some kind of immunity bubble.  I hated that you were there with me, in that place full of germs, but I felt that if I took you with me maybe the doctor would fall in love with you and advocate for you as much as I do.  I want them to agree to prescribe your aspirin so that I don’t have to keep facing the battle at the end of every packet.  I felt like if they saw you, there would be a more personal connection and they might fight harder.  The doctor appeared unmoved.  I told the Doctor that I believe I may be suffering from post-traumatic stress disorder, and that as time goes on I am noticing some of the signs of  an old ‘friend’ that I thought I’d managed to banish from my life.  He asked what I had in mind, and suggested antidepressants.  I’ve declined that for now, and asked to be referred for talking therapy.

I have so much hurt inside that I could lock myself in a padded room and just scream until there is nothing left.  I am not what most people would describe as depressed (but then, how many people get that right anyway?!)  I function pretty normally.  I get up in the morning, shower and make myself presentable (in my humble opinion!)  I change you, dress you and feed you, and I run around after your brother to make sure he is ready on time for the school run.  I smile and chat to the other mums in the playground, and I genuinely enjoy seeing other people.  I don’t cry all the time, but I cry a lot.  It used to be that I just cried when I thought about all of this.  Now I cry over a lot of other things too; like things I see or hear on the news.  Yesterday, an 11-year-old boy in America shot an 8-year-old girl dead.  That made me cry.  I’ve started chewing my fingers again.  That’s a sign of anxiety for me.  And I’m angry and sad, and irritable and irrational all at the same time, which is exhausting.

It’s like my insides are all tied up in knots, and I feel like I am constantly holding my breath.  I thought that writing about all of this would make it all better; that in some way it would be like self-help.  It hasn’t worked out quite how I planned.  I text my kawabuddy pretty much every day, and that makes me feel better because I know she understands how this feels.  And yesterday we went to Nottingham to meet a lady who founded the Kawasaki Support Group here in the UK, and she still remembers how this felt for her 20 years ago.  I think everyone else probably thinks I should just get over it and move on; that you are better now.  You are here.  I know I should too, but this disease is full of surprises and it’s like I am waiting for its next move.

The fact is that somewhere in between the 31st May and the 12th June my heart broke.  I can’t say when the damage actually happened, perhaps around the same time that it happened to yours.  What I do know is that, like yours, it is slowly repairing.  But it remains broken.  I have sought help to heal it, but accept that it may never heal completely and there will always be some small part that Kawasaki’s killed; the part that believed that I could protect you from anything.

I loved you from the very second you were born into arms that shook with fear that they might hold you too tight.  I love you more today than I did yesterday, and I shall love you even more tomorrow.  Your smile will help to mend our broken hearts.

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Are we ok?

Posted on by Bluemama

Two of the most common questions I get asked these days are, “Are you ok?” and “Is Freya ok now?”  I’m not sure I know how to answer either of those things, so usually the first question gets a, “Yeah, I’m good thanks.” and the second receives a “Erm, yeah, kind of” response because I’m genuinely not sure what I should say.

Let me try to address the second question.  Is Freya ok?  She is clinically well.  She has no symptoms of any illness, no inflammation, no fevers, no rashes and no pain (as far as I know; she’s too little to tell me).  She feeds well, is growing nicely and has taken to weaning like someone who has just come off a diet.  She rarely cries, and when she does complain it is usually to tell us that she has a dirty nappy, is hungry or tired.  She goes to bed between 5pm and 6pm every evening without exception, and does not make a murmur until she wakes around 7am the following morning.  And when she wakes, she will lay in her cot looking around and cooing to herself quite happily until we greet her with the customary “Good Morning!” and are met with the brightest of smiles which only disappears when she is devouring her bottle!  During her waking hours, she is happy to lie on the floor or on her play mat, or sit in her chair, where she will play until she’s tired or hungry.  If she gets tired she might whimper a little but often falls asleep right where she is playing.  She has a smile for everyone, and she makes it possible for me to smile despite all of our recent troubles.

That said, she has a heart condition as a result of her illness.  Kawasaki Disease is a vasculitis; a response in the body which causes inflammation of every blood vessel, with a particular penchant for the heart.  The coronary arteries supply blood to the heart muscle.  These arteries will become involved in 25% of Kawasaki cases.  Treatment within a 10-day window significantly reduces that risk to around 6%, but for those of you that have followed our story you will know that Freya wasn’t diagnosed until day 13 of her illness and her heart suffered.  There are 3 main arteries that supply the heart; the left coronary artery (LCA), the right coronary artery (RCA) and the left anterior descending (LAD).  At the time of her diagnosis, all 3 of Freya’s coronary arteries had dilated (expanded) to over 5 times the normal size for a baby her age.   The risks associated with that are rupture, (where the artery wall gives out through weakness as a result of the expansion), and thrombosis (where the blood is allowed to clot within this new expanse).  At Freya’s age it was considered inoperable; a graft of the vein in the ankle is taken to replace the coronary arteries, but in an infant the success rate is poor.  Plus, as the baby grows they run the risk of outgrowing the new arteries, resulting in further coronary complications.  All they can do is administer the treatment (in Freya’s case, 2 doses of intravenous immunoglobulin, high dose aspirin, steroids and a single dose of intravenous Infliximab) to stop the inflammation in its tracks, and then regularly monitor the arteries to ensure there  is no further growth.  And hope.  Once that is under control, a child will usually be prescribed with a blood-thinning (anti-platelet) dose of aspirin and, in some cases, an anti-clotting (anticoagulant) agent like Warfarin.  Both of those, in slightly different ways, work to keep the blood flowing through the arteries, and to stop the blood from clotting.  Thrombosis would result in a heart attack.

Freya has shown remarkable progress, receiving a few “Wow!”‘s along the way, and even a message from Professor Jane Burns (a KD specialist in the States) saying “I expect she is safe and fixing the problem on her own. Well done, Freya!”  The arteries are now only 3 times the size that they should be, and we hope that they will continue to regress to normal size over the coming months/years, or that Freya will grow into them as she grows.  There is a risk as the arteries start to repair themselves, that the scar tissue causes stenosis; a narrowing of the arteries.  This can be treated with surgery in later life (you may have heard of a stent), but if stenosis occurs it can severely affect the function of the heart and is potentially fatal.  We do not yet understand if this is a risk for Freya, nor do we know what the long-term impact this disease will have on her, due to the absence of long-term studies.

And then we have the question of her immunity.  Her immune system was temporarily suppressed by certain medication, such as the steroids and Infliximab.  However, the immunoglobulin contains antibodies from thousands of blood donations and should cover Freya from most routine illnesses (and a few more weird and wonderful ones) for around 11 months from receiving it.  She has had no routine immunisations, and the advice (well, the most reliable advice anyway) that I have received is that she can have the killed vaccines approximately 3 months post-treatment (for Freya that is the 8th October), and any live ones once the IVIG is out of her system (approximately 11 months after treatment; June 2016 in Freya’s case).  For patients taking regular aspirin, there is a risk of developing Reyes’ Syndrome if the patient comes into contact with Chicken Pox or Influenza.  Although the risk of developing Reyes’ is rare, and is more often associated with patients on high doses of aspirin, it is a very nasty illness which affects the brain and can be fatal.  As a result, it has been recommended that Freya be given the Chicken Pox and Flu vaccines, but that she would have to stop taking aspirin for a period of time surrounding the immunisation being administered. That is probably my biggest cause for concern at the moment; how the hell do I protect her from Chicken Pox and Flu until next Summer?

Is she ok? Yeah, I guess she is.  She is not considered to be in immediate danger (from a cardiology perspective).  She will continue to take her daily dose of aspirin, probably for life, and will be monitored into adulthood.  You really wouldn’t know that there was any problem with her heart at all to look at her – she really is a wonderful baby.  But Kawasaki Disease is full of surprises and unknowns and shades of grey, so we just have to take each wonderful day at a time and hope.

Am I ok?  That depends on when you ask me, I guess! Or the circumstances in which I am asked.  I’m not sure that everyone that asks really wants to hear more than a “Yeah, I’m good thanks!” with that Invisalign smile that I’ve perfected over the years. But do you know what, I really am ok.  Ok isn’t brilliant, is it?  Ok isn’t absobloodylutely fabulous. Ok is just ok.  Not good, not bad.  Maybe up, maybe down.  Some people will worry that I may be suffering from depression, particularly since I have some history.  This isn’t that.  I get up every morning with a spring in my step.  I get a shower, make myself presentable to face the world.  I do the school runs, I iron, cook and clean; I function on a day-to-day basis just like any other mum would.  I spend most of my day playing and chatting with Freya (I mean who wouldn’t want to do that?  You’ve seen her, right?!)  We go out when we are organised, we stay home when we’re not.  Apart from staying away from playgroups and nurseries, we are not inhibited in any way.

With the avoidance of the aforementioned child-filled establishments comes a sense of loneliness.  I love spending time with Freya, but my world is mostly just me and her.  We rattle around here and there while I try to make the best of the hours we have together, but I miss having other people to talk to.  I’m an incredibly sociable person, I thrive in a group, and I stumble when I am left alone for too long with my thoughts.  That’s why I try to get out and about, rather than staying indoors where I have too much time to think.  I don’t know how best to describe how I feel.  I feel kind of numb, like every moment I spend out there in the world with Freya is surreal, like I can’t quite believe we are doing normal everyday things where other normal people go to do normal everyday things.  Maybe that is just it.  Maybe this is normal, but that it seems that Freya’s illness has been part of our lives forever so I don’t remember what normal really is.  And then I’m scared to let ‘normal’ in, because what if I forget?  What if I start to take things for granted? What if Kawabloodysaki’s comes up behind us and shouts “Boo!” just when we are least expecting it?

A friend recently suggested I might need some help to get through this.  At the time, I dismissed the concern.  I knew it wasn’t normal to cry as much as I did (still do), or to feel the anxiety that I had (still have), but there wasn’t anything normal about this situation either was there?  So I plodded along, dealing with it in my own way with a watchful eye out for signs that this was becoming something bigger than I could handle.  With each day, and with every bit of good news we receive about Freya, I expected the pain to start to dwindle.  If anything, it has grown.  It’s like now that we are out of the worst, and the adrenalin that kept me going for all those weeks has stopped coursing through my veins, things have finally started to sink in.  What do I feel the most?  Anger, sadness and disbelief.  I am angry that Kawasaki Disease chose my daughter.  I am sad that Kawasaki Disease stole some of what should have been the best of times with my new baby girl.  And I still feel utter disbelief that this happened to us.

I have an appointment with my GP on Wednesday 7th October at 9:30am.  It’s time to get some help.

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