2018 · life · motherhood · mothering · parenting · real · truth

Our story with Kawasaki Disease.

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Kawasaki’s disease.
Ever heard of it before? Nope, me either – it’s uncommon, but it’s serious and I feel more parents should know about it…
Please read THIS FACT SHEET to learn more (seriously, click that and read it, learn the symptoms)
This is a disease that should be on every parent’s radar. It is noncontagious but it’s very serious and needs treatment in under 10 days to help reduce the risk of long term damage to the heart.
Let me tell you our story with Kawasaki’s….

Saturday the 20th of October – LuLu’s party day, we woke up and our little man was just a bit “off” – nothing major, just grumbly and a bit clingy. He enjoyed the party and spending time with his Nan, but he didn’t eat as much as normal and we all agreed it was probably due to a big molar he was cutting. That afternoon he started getting lethargic and that night was dreadful. He was awake screaming & he had a fever in the high 38c’s.
Sunday morning when we woke up he had a rash on his tummy, by the time we had finished breakfast and we changed his nappy again it had spread to his back. So off to the hospital emergency department we went.
The doctor thought it could be just a viral thing – possibly hand, foot and mouth, I didn’t feel it was that – but being a viral thing made sense – kids get those.
By 4pm that same day the rash had intensified, so back to the hospital we all went. This time a new doctor said it was a random allergic reaction, Tommy was given an antihistamine and then steroids.

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This was his rash just before 4pm on Sunday evening.

We went home after a few hours and when we woke up Monday morning around 6am the rash had faded and he seemed to be on the mend.
A few hours later before 9am, the doctor from the hospital called and wanted us to return, she believed it maybe scarlet fever. By the time we arrived at the hospital, Tommy had gone back down hill and the rash had returned. (The steroids and antihistamine had masked the rash temporarily) We were given a script for penicillin and went home. At midday he started vomiting, I contacted the hospital they said it could just be the combination of scarlet fever, high temperatures and medicine making him a little unwell. He threw up a few more times and then again after we woke on Tuesday morning and now he had diarrhoea. We took him back to the hospital.
This time he had a blood test straight away and a cannula was inserted to start fluids.

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His “bear paw” – his first cannula.

They ran many tests; blood cultures, x-ray and from memory I think they started a broad spectrum antibiotic. And they started organising transfer to Toowoomba either by ambulance or care flight – which ever could come first. Ambulance it was.
Dalby Hospital did everything they could for our little man and their level of care was great. I can’t fault them for the multiple diagnosis, from what I have read this is very common in the early stages of Kawasaki’s because the rash and symptoms continually change and the symptoms could be many different illness, it’s all a process of elimination. The doctors and nurses really cared for him and we are so thankful.
Before 2pm on Tuesday we were loaded into an ambulance with a lovely nurse, I’ve never been in an ambulance before so that was an experience and I sat beside him holding his hand for our very quick trip. Trent and Lucy followed behind.

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I sat in the seat beside him on the right and he slept most of the trip. Thankfully we got there very quickly.

We arrived at the base hospital in Toowoomba, we were told paediatricians were on stand by waiting for us – we weren’t seen at all by one, so there may have been so miscommunication. Tommy threw up all over me again while we waited. We ended up asking for a transfer over to the private hospital and drove ourselves there. We couldn’t watch him become more unwell and no one could tell us when he would be seen properly. The base hospital was very busy.
We arrived at the private hospital at 7pm and were given a bed and a private room immediately. That night our little man suffered through more blood tests and they had to put in another cannula. He was started on more fluids and antibiotics. At this point they were worried about sepsis, a few viruses and possibly meningitis. Those possibilities were terrifying. We were exhausted at this point it was a hugely long day, I believe Trent left us at around 10pm that night to go back to Dalby.
The next few days were a blur with lots of tears, I sat in a hospital bed scared out of my mind holding our little man who just slept. He didn’t want to do anything and he was so upset. I felt like a zombie and my heart was shattered. Days earlier he was his normal cheeky self. I was wracking my brain trying to think how he got sick and I didn’t stop praying for him to get better. Trent drove in each day to be with us.
Wednesday was a rough day of more tests and this was the day he started to swell up. His little body went puffy, his hands and feet were like little balloons and his eyelids were so swollen. He is normally such a petite little guy, in hospital he gained 1kg due to the swelling. And his eyes were so red and blood shot, they looked painful.
Thursday I remember he sat up and finally ate something, he ate a jatz biscuit and a lemonade ice block for breakfast and then some weetbix. That was a huge moment, he hadn’t eaten for most of the week except a small amount of yogurt on Tuesday – which I ended up wearing anyway. He also had to have another new cannula put in that day, his 3rd one.

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During all these days we were waiting on blood test results, monitoring him constantly, weighing nappies, measuring water and our paediatrician was conferencing with the Lady Cilento paediatric team and infectious disease management team. His rash continued to spread down his arms and legs and he remained so puffy.
Thursday evening the paediatrician asked me if I had ever heard of Kawasaki’s disease… I hadn’t. She and the doctors she had been speaking to believed this is what he had, unfortunately there is no test for this disease – just ruling out other possible problems and that’s what we had been doing. Eliminating other viruses and illnesses. Every test was coming back fine, well not fine. His inflammation levels were through the roof, the highest she said she had seen in such a young child, his kidneys and liver weren’t doing great and multiple other worrying results – but for specific viruses nothing was coming back. Throat swabs, nasal swabs, stool, urine, bloods – it showed no illness – but there was clearly something going on.
We were waiting on one more test result to come back before we treated for Kawasaki’s… The only symptom that wasn’t exactly right for Kawasaki’s was his temperature wasn’t getting over 39c, but it was in the mid-high 38c – but the doctors believe the steroids he had been given on Sunday evening were effecting his fever. Because even with regular panadol & nurofen his temperature would continue to be higher than normal and he felt so hot.
The test result still wasn’t back by Friday afternoon – so we agreed it was best for Tommy to start the treatment anyway. The treatment is intravenous immunoglobulin – so it was not dangerous at all for him to have. Trent and I sat with him while the treatment happened and we prayed so much that it would work.

 

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Receiving the IVIG treatment.

Trent stayed in hospital with him that night and I went home to snuggle LuLu.
Saturday he did seem to pick up, he was more alert and playing. He was actually playing with toys! He ate more and just seemed brighter. We were so thankful that this treatment had seemed to work, if it hadn’t he would’ve had another round of it and if that failed, then he would receive a lumbar puncture – but thankfully we avoided that.
I stayed Saturday night and it was awful. We barely slept at all and I feel it was because he was more alert, suddenly he was much more aware of where he was and he was scared. So that was rough, but understandable with the constant nurse checks and flushing of his cannula. He was so sick of being poked and prodded!
On Sunday 28th/October he was weighed and was back down closer to his normal weight, we were getting our tiny little man back and after more blood tests we were discharged. It was so wonderful to get back to our big blue house and our own bed.

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The paediatric ward we stayed in, we were taken care of so well and all the staff were beautiful – but I hope we never have to return.

We saw our paediatrician the following Thursday, she said one of his blood results showed possible glandular fever as well.
The poor little guy, Kawasaki disease, possibly glandular fever, teething with molars and the paediatrician also believes he could’ve had a mild case of viral meningitis (due to his very sore head & neck).
We had another round of blood tests today (Thursday 8th/Nov) to check again for glandular fever & a bunch of other things, just to make sure everything has remained ok in his little body and we hope the glandular fever result was a wrong one and he hasn’t had that.
At the appointment we also discussed how upset and unsettled he has been since coming home. He has really good & normal moments and then he will just melt down and he is so sad, he doesn’t like being away from us and some nights he sleeps well and others he won’t settle at all… She believes his stay in hospital has traumatised him and he is suffering from a lot of stress. He still is suffering body/joint pain, peeling hands, feet & lips and appears to get very bad headaches. So all we can do is love him through this, we cuddle a lot, we carry him and stay close to him, we are gentle, we do massage and just take things easy. From the reading I have done these symptoms and the behaviour is expected and normal after Kawasaki’s.
Each day is getting better but we still have 6-8 weeks to go until we know if he has come out of this ordeal ok. In that time frame he will get an ECG done in Brisbane and that is to make sure his heart is ok. Until that test he has to have aspirin every day.
This experience was horrific. I am so thankful his issue was treatable and he responded well to the treatment, we continue to pray that his little heart will be totally fine and we have faith it will be, especially because he received treatment before day 10.

I want to encourage you, that if your child is sick and you are given one diagnosis and then they worsen/change – go back. Keep going back until the treatment works or you see improvement. You don’t have to accept one opinion. We are our children’s advocates. We have to fight for them. I knew each time in myself when he needed to go back to the hospital and I didn’t care if it turned out to be nothing, I would prefer to be known as the over cautious Mother than regret not taking him or leaving it too late. If we had just agreed it was some viral thing and tried to ride it out over a week, I hate to think of what the outcome could’ve been.
Because even in hospital with constant fluids and daily antibiotics given through his IV, regular pain relief and routine observation they were describing him as flat and not improving. I hated hearing that at each shift handover, I just wanted to hear he was improving – but I knew he wasn’t but I also knew he was in the best place and was being taken care of.
This was easily the most scary and awful week of our life. One I wish on no one and my heart breaks for families going through worse ordeals than this, gosh I can’t even imagine it. I know we are fortunate that it was this and nothing more serious.
So what caused this? It is unknown, it could’ve been anything – most likely just a basic germ and his little body sent it’s immune system into over drive causing all of his arteries throughout the body to become inflamed. Prior to the Saturday he hadn’t seemed unwell or anything, so we are puzzled. But we are praying this ordeal is now over and his ECG will come back with good results.

This blog post was created to draw awareness to Kawasaki’s disease. If you are concerned your child has Kawasaki’s please go to your nearest hospital or GP. If your child has this and you need support please feel free to email me at modernwifelife31@gmail.com and I can connect you with a great support group.
I pray you never experience this disease first hand, but if you do, know you aren’t alone.
Thank you to so many of you for your genuine kindness, concern and compassion over the past few weeks.
We would appreciate any prayers or positive thoughts towards healing and good results.

Thank you.

Once again, please click on these links and educate yourself on this disease and share this post or those pages with any other parents you know.
Kawasaki Disease fact sheet from Royal Children’s Hospital Melbourne
Kawasaki Disease foundation Australia 

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2018 · IBD · life · real · religion · Sunday series

Sunday Series; Anger towards God and what’s on my heart & in my head. {IBD}

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So it’s been a while since I’ve done a “Sunday Series” and to be honest I wrote a bulk of this post – the raw & angry section on Friday night, in tears and on my phone while everyone else was asleep … But I chose not to hit post.
I prayed about it instead, gosh I was cross at God that night, He copped an earful from me… I feel like He is ok with that. I kept getting the feeling that every single damn thing we are hit with in life is a lesson, a blessing and those hard times are there to teach us something, even if it is just the story to tell – to help someone else. So who knows who this will help, maybe it’ll just help me to get it off my chest… But let’s do this…
Right now I am sitting in my room on a Saturday night, listening to my baby cry for me. He is ok, his Daddy has him – but that baby boy wants me and it’s breaking my heart. He wants to be fed back to sleep. He doesn’t understand why he can’t have “boobie” like he usually does… Twice last night he woke and far out was he angry that I wasn’t the one comforting him. I laid in bed, tears stinging my eyes as Trent cuddled him out in the lounge room. But I think I am getting ahead of myself, here’s what I wrote in the late hours of Friday night, while my face felt hot and had a constant pouring of tears…

Today (Friday) was hard, this Friday really sucked, I hate having a bad Friday – it’s like it jinxes the weekend.
I had my specialist appointment today where I knew we would be discussing “level 2 treatment” (for my IBD – if you would like to read about that you can CLICK HERE)
I failed the safest and most basic treatment, after starting my first lot of medication after my scopes at the beginning of July, 2-3 weeks later I started to struggle to breathe – that was a severe reaction. It was quiet traumatic for me, it was awful gasping for breath and nothing could be done except to let my body come off the medication. It took about 2 weeks and then I was fine, I could breath again normally. Anyway, the next treatment option is pretty hardcore, so intense that it’s 1 tablet per week. And folic acid tablets every other day of the week.
The shit part of this, (besides the IBD) is that I cannot have any more children in the near future. If I want to have anymore babies I have to be off this drug for 6 months. And sadly I have to cut short my breastfeeding with Tommy and that breaks my heart because I know he isn’t ready. He is ready in the sense that we smashed our goal of 1 year, on Friday funnily enough he was the exact same age Lucy was when I last fed her – 20 months and 3 days. But with Tommy I was hoping to get to 2years. Back when I was pregnant with him and diagnosed with IBD we thought I may not be able to feed at all I was so sick. But we did it, I’m proud of what we have achieved but I know he still needs me. And I still need that tiny shred of babyhood. Trent & I have talked about the reality of having no more kids for awhile. He is very happy with 2, I however would love like 10 – or at least 1 more, but I see where he is coming from. When I’m pregnant I get dreadfully ill and our world stops, I don’t want to put us through that again. I basically become a useless human and I can barely care for myself, let alone 2 small children – so I know having no more kids is the sensible choice. But hearing my doctor say that I cannot under any circumstances fall pregnant on this tablet was very shocking, because while a baby isn’t being planned if it happened it would be wonderful (& incredibly surprising). But now it’s very final. Like I know we won’t have another but this just makes it very certain for now. (I say for now, but that’s just my Mumma heart staying hopeful. The reality is – it won’t happen.)
I just wish I had that finished feeling so many women have, like I have friends that are 110% done with having babies, but I am not… But I know I have to be…

So letting go of that last moment of babyhood is rough, especially when it is happening so abruptly. My heart is broken. I hate this disease – I hate it so much. It’s stolen so much joy from my life. My pregnancy with Tommy was all about this stupid illness, I couldn’t enjoy life or being pregnant for my final time, I just was scared the entire time and now it’s cutting short our breastfeeding journey.
It’s fucked honestly.
Even doing this intense drug won’t cure this disease, it just hopefully puts it into remission and if everything goes to plan we can reassess in 1-2 years, my doctor said some people chose to come off of the treatment at that point but a high percentage relapse & she said judging by the severity of my disease, if we can manage it and then I chose to stop the drug there is a super high chance I would become ill again. But we will cross that bridge when we get there, we have to hope it works first or it’s onto the next medicine…
I had a whinge about this on my insta stories on Friday and I had a mixed response of messages. Some people were just beautiful & saying they are sorry & just being kind. Others were sensibly saying my health is most important and I’ve done well feeding Tommy, I should wean and start the treatment and others were saying to keep feeding him and put the treatment off. I feel those last group of people don’t actually understand my problem.
Trust me I asked my specialist this, she said very bluntly “you can wait, but if you do and I can confidently predict you are heading towards having a major flare up and how extensive your disease is, you’ll get so sick that we will be at a loss for treatment options”. Do you know what that then leaves us the only option for? Surgery. And my whole bowel is sick, not just parts, so if 1 part goes bad the whole thing is.
So to avoid surgery & options I don’t even want to consider yet, I know I need to try this medicine. Trent is 110% supportive of this, he told me it’s not even a question – we are going to wean Tommy and start the treatment. That’s why he is out there right now with one very cranky 20 month old.
So that is where I am at. Being forced to stop breastfeeding, something I love and I find is so special to me. With LuLu I weaned her at exactly the same age Tommy is now, but she was ready – she didn’t fuss or care. Tommy though is a Mumma’s boy, he is so attached to me – like LuLu is to Trent… Every baby is different and I know this is harder on him than it was her, and I think that is what upsets me the most. So for now, he only gets a feed at bedtime and that will phased out very shortly and I plan to start the medication ASAP.
In an ideal world I would opt out of the medication, drink a herbal tea or some sort of magic broth and be cured – but it’s not going to happen. This disease is incurable, only manageable and it doesn’t matter what magic diet you are on, it won’t change the fact my gut is trying to kill itself. My scopes revealed my entire large intestine has highly moderate active disease, the entire thing – like it’s every where. That is way, way worse than I ever thought, like the entire stupid thing is sick! Honestly for the past 2 years since I was diagnosed I’ve been telling myself I am actually “not that sick” – that it all could be just in my head… It was a bit of a smack in the face to be told “no you are sick, you need to do something about this or it will get very bad”.
I hate going to doctors appointments, I walk out so overwhelmed and confused. Being sick is dreadful enough, having to remember every result, medication and test is worse. Especially when your brain is foggy 98% of the time… I’m flat out remembering milk let alone everything else! I am just hopeless at being sick, I hate rest and I forget everything! During that appointment my recent blood tests also confirmed I have markers for arthritis – so I have to at some point get that further investigated. But the drug I’m about to take could help with my bone/joint pain…
This drug that I am about to possibly take is scaring the absolute life out of me though, like it is hardcore. Every time I read about it, something new pops up and makes me feel physically sick at how intense it is. It’s used (in larger doses) for chemo. So yeah, there is a whole host of side effects that can come along with that and then we have to play the game of is the side effect worth tolerating so I am “better”. I’m just praying I can stay on the minimum dose and manage my disease and have zero side effects. That is the best case scenario.
So yeah that’s my thoughts for now… Thank you for understanding why this post is all over the place and Lord only knows if you understood my ramblings. But maybe this was meant to be written, just to keep my own sanity or maybe you are dealing with something similar and that’s why you stumbled upon this mess of words and emotions.
I get it – this disease is dreadful (I have a few other colourful words for it, but I’ve already sworn twice in this post…) and I’m sorry if what I’ve written here hits home, if you can relate or you are dealing with or have dealt with something similar.
Feel free to reach out to me on my social media if you wish. Praying for you and for me!

Facebook.
Instagram.
Twitter.
Pinterest.
YouTube.
Snapchat; Bindy_30

And friends, if you are dealing with a hard time in your life health related or not – I am praying for you. Sometimes we cannot see why we are struggling in certain seasons, we can’t see the big picture of why and our life – but He can. Every little thing in our life, the good, the bad, the heartbreak and the regret – it’s all for a reason. One day you understand why, but gosh I know what it’s like to be in the trenches of it, wading through so many emotions with your hands in the air going “Why? Why this? Why me? Aren’t you meant to love me?” I get it. I’m there, I’ve been mad at Him and now I’m just heartbroken & feeling very low… I do not have time to be sick, my life is so full and rich in excitement – we have so much to do and enjoy and I can’t. I want to be living my best life and right now I feel like I just survive most days, I collapse into bed sore & worn out. I do know I have to learn to stop over committing so much, the other weekend I had to pull out of some fundraising work I was doing and I hated it, letting people down was awful. But I had to put me first, I couldn’t do that, do what I needed to at home and feel ok. I was so weak, but I am learning to realise I can’t “do it all”.
97.5% of the time I pile on the makeup, plaster on the smile and I’m good to go. Even when it hurts to just walk – I don’t care – I am pushing this illness to the back of my mind – ignoring it. Maybe you get that, maybe something else is hurting you and you just push it down and ignore it. But eventually we have to face it, we have to deal with it – even when it’s scary & confronting or unknown… If we push it aside & down forever it just grows & becomes worse, than we are dealing with an even worse mess! This can be a health problem, anger, hurt – anything. They are all so similar. No matter the problem, everything needs to be eventually dealt with. And when we have to do that, it’s so wonderful to be surrounded by people who love you and support you, but sometimes you are alone or no one else gets it. If you have no one else, He is there. He put it before you, He will bring you through it. I keep telling myself that, our Lord gave me this challenge (and I am not impressed by it nor do I get why…) but I just have to trust His timing, His plan and have faith that He will get me through it. Scary drugs and all… I’m thankful that it’s this and nothing worse, but far out I just wish it was something relatively basic, like I don’t know a cold… But it is what it is, and I just have to trust that He already knows the outcome, what happens is His plan.
Still pissed about it, but I have faith, I’ll be ok – just not right at this very moment…
Thanks for reading (especially if you made it all the way to the end.)  Your support means more than you realise.

If you would like to donate towards research for a cure for IBD and also help to raise awareness please CLICK HERE…  

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A few verses & quotes that have helped me recently…

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34

I love you, Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold. Psalm 18:1-2

The only way God can show us He is in control, is to put us in situations we cannot control.

He heals the brokenhearted and binds up their wounds. Psalm 147:3

So do not fear, for I am with you: do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10

“But I will restore you to health and heal your wounds” declares the Lord. Jeremiah 30:17

When I am afraid, I put my trust in you. Psalm 56:3

Jesus replied, “you do not realise now what I am doing, but later you will understand.” John 13:7

God will redeem your pain and replace it with purpose. Priscilla Shirer

When hard pressed, I cried to the Lord; he brought me into a spacious place. Psalm 118:5

We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. Romans 5:3-4

Dear brothers and sisters. when troubles of any kind come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing. James 1:2-4

We also pray that you will be strengthened with all his glorious power so you will all the endurance and patience you need. May you be filled with joy. Colossians 1:11

So be strong and courageous! Do not be afraid and do not panic before them. For the Lord your God will personally go ahead of you. He will neither fail or abandon you. Deuteronomy 31:6

Dear friends, don’t be surprised at the fiery ordeal that has come to test you, as if something strange were happening to you. 1 Peter 4:12

I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world. John 16:33

Your illness doesn’t define you, your strength and courage does.

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