Are we ok?

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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4 thoughts on “Are we ok?

  1. I know that it will feel as though you are in a bubble and my words are just bouncing off, but I can personally say I know how you feel and that I get how there are just no words to really describe the loneliness you feel sometimes. I can say that there’s a light at the end of the tunnel even when there is no wood’s end. My little guy has giant aneurysms from KD. He had a heart attack at 3 months old. He is triple anti coagulated. He almost needed (may still need) a heart transplant some day. I get it. All I can say is that there is a way to feel normal again even when you can’t possibly fathom how. Our kiddos need for us to be happy for them. They need us to be the strong ones. Every inkling of hope is a new adventure. Even if all you hear is that your kid is stable and doing well, that is a moment to rejoice. I know it’s hard to see it getting any easier now, but it does. The appointments still suck, but day-to-day becomes normalized and you’ll learn to live life again. My only advice to you that was the best advice to me? LET HER LIVE and ENJOY HER!

    Lots of hugs, mama… ❤ ❤

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    • Thank you for your kind words. I feel terrible really, because in the scheme of things Freya has fared really well. She has shown improvement like we could never have imagined, and so far she shows no sign of having been affected at all by her illness. She is a perfect little angel. And I do enjoy her, I really do. I daren’t tell myself that she is ok, because I don’t want to tempt fate, but I am less scared. And that’s why I know I need a little help. I’ve never experienced panic attacks before, but that’s what happens whenever I go back to the hospital where it all began. I’m a talker (you might have guessed, lol!) so I’m going to get some counselling and see if I can put some of the horror behind me.
      Your poor boy (and you). You see, that’s why I feel awful because I know there are kids out there like your little one that have had a far tougher time than we have. But it’s all a personal journey isn’t it, they’re our babies. And I think when they are so young we also have the added post-partum hormones flying around in there too.
      Thanks again, and know that every story I hear about touches my heart and makes me feel like we can do this xxx

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      • Honestly, there is no such thing as a “tougher time” in the grand scheme. The reality is that no parent wants to see their child suffer this way. Therapy helped me cope and it took me a year to realize I needed it! I couldn’t go a single day without looking at my baby and crying and wondering why. Then one day I realized that I couldn’t be that way. I HAD to be strong to teach Liam to be strong. Sometimes, that’s the only reason I am. It’s a hard path, but we’re on it for a reason. That I firmly believe and will teach my son as he gets older. Let’s just continue praying and thinking positive about their futures. Nothing is guaranteed! There is still so much hope. 🙂

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