The Harrowing Nights

Personal stories of individuals and families affected by Kawasaki disease
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The Harrowing Nights

Post by zarashai » Thu Nov 07, 2013 6:28 pm

Hi everyone. I am new to the forum but I have been a seasonal reader of Kawasaki forums and sites. The reason I am typing in now is because I have been 3000 miles away from my daughter for about a month now and I miss her dearly. She just turned 4, and this is her story of her Kawasaki 3 years ago.

My wife gave birth to our first child in October 2009. She was the most precious gift I have ever received and I was blessed to be a father. Every night from birth I cradled her in my hands, swayed her on my lap as she grew in smiles and laughter. I sang her nights away and greeted her mornings with dances and hugs. So precious she was that being the overprotective father that I seemed to be, I worry of every temperature and every cry. I thought none of a vicious circumstance, until one day in May 2010.

7 months old, she woke up agitated by a spike in her temperature. It reached above 40c. We soon brought her to a clinic in her wails of pain and fear, and the GP could not see any fault less a very bad fever. She was prescribed paracetamol, which we duly followed as instructed. We felt relieved when her temperature dropped to normal and she began to behave like her old self again devoid of pain and restlessness. But our joy was shortlived. The fever seemed to be waging a battle with the paracetamol and it was winning. So much so that paracetamol was no longer effective. It was merely a temporary buffer. Knowing the hazards of high temperatures, again we raced to a different clinic. We were again told that she has a high fever nothing more, and was prescribed a suppository. The suppository was indeed godsent at the time as it had a longer effect in bringing down the temperature. However, again it seems the fever was determined to wage war on all things medicine. And sadly again it won over my child, rendering her an unresponsive baby. It did more. Her lips were cracked upon and her eyes red. We were terrified of losing her.

Again we brought her to another GP, who never did know what to do. When all else failed and with no one to turn to, we resorted to get an opinion from the most expensive medical institution in the country. If I need to sell my house, my life, so be it. I just wanted the fever to return back my baby.

It was past midnight and we rushed into the pediatric care. A doctor was called from somewhere to tend to my baby and my wife and I were ready to stay in the ward if needed even when it would cost a night an arm and a leg. While my wife waited for the doctor with my child, I drove home to snatch a few pieces of clothing to wear. On the way back to the hospital, my wife called. In a confused voice, she told me of what the doctor said. "Our daughter has Coxsackie".

Not being a medical person, I thought well that sounds familiar. Many children gets it. While driving I had to chance lookiing it up on the internet of what Coxsackie was. It was hand food and mouth disease. A virulent disease that comes seasonally in my country. I had mixed emotions of relief and apprehension. But little did I know that it was far far worse than I had assumed.

As soon as I arrived, my baby was in my wife's arms, still in discomfort. And the doctor on the bedside handed me a print out from his computer. It had the title "Kawasaki Disease". I have never heard of it but it sounded horrible. The doctor walked me through on what it was and how using only his diagnosis he was able to confirm that my child had KD. And while listening to his explanation, my eyes skimmed to the bottom most paragraph. I could not remember its exact words, but it shouted at me, KD is a medical emergency and it can be fatal. My heart literally stopped and my life felt like it has lost its purpose. There was a moment when I would have gladly traded my life in that instant if that were to guarantee the survival of my child. That was how much I love her.

But I had to be strong. My wife - it has always been her personality to take in to the emotions I display - was awaiting to see if my face had changed its appearance. It was extremely excruciating to hide the panic inside but I realised sanity and calm is needed to get through this ordeal.

The doctor first gave me an option. The only way to treat my baby was with an IVIG, and they can treat my child there and then if I were willing to fork out around $2,000 for a bottle of IVIG. Instantly I said whatever it takes. The doctor then gave me a suggestion. There is a resident Kawasaki pediatrician expert in the state hospital and he could put in a word to transfer the treatment there. He insisted it was for the better. And I obliged.

The process was quick. They wrote a referral letter and rang the pediatric ward to anticipate us arriving there. It took a 15 minutes drive in a very quiet car ride. Speculations in my head I did not share with my wife for her own good. We arrived in a dead silent ward and instantly were greeted by nurses. A different pediatrician was there as the expert will be arriving in a few hours time. The doctor had been given instructions on what to do. It involved putting my child on an IVIG drip. This was the start of our harrowing nights. Because, in order to set a drip, you need to find a vein.

My daughter was a petite 7 month baby and had very unnoticeable veins. We were not sure if it was genetics or her diet has molded her so, but how we wished her veins were to appear. The nurses were to prick the needle for her IV drip. Once. Twice. Thrice. Every single prick she could not find a vein. A dozen times she tried and every single prick was pain shuddering my daughter's body. And with every single wail getting louder. I cried. I never cried so much in my life. I wanted the pain to stop. To go away. To forget about the IV and to leave my daughter alone. But I knew it was here only chance to survive. I helped the nurse in holding my baby still as my wife couldnt take anymore of her crying. My baby was crying, crying for our help. She wants us to stop the pain. I could see it in her tearfilled eyes. I was distraught. Almost hysterical but I kept a strong grip. I comforted her with songs and lullabyes. In between rests, my wife and I hugged each other crying our tears out as my baby was lying almost still on the treatment bed tired from her struggles. Her eyes filled with sadness because her parents had abandoned her. That was how I felt when I saw her eyes. I felft so much guilt. A bad parent. It was the worst feeling I have ever felt in my life. It filled my chest it damned my soul. It sucked everything.

Nurse after nurse came to our help. Each one trying their best to find a vein but it was a futile attempt. Until there came a nurse, a senior who was easily double the age of the other nurses. She had the dotting mother aura. Someone I could relate to as my own mother. And she was our nightingale. A few attempts on my daughters hand and she finally was able to connect to a vein. Not a big one but it was a start. After hours of the ordeal my daughter who has had enough seemed to have given up on her parents. But we took her into our arms and assured her she was the world to me and my wife. She had an IVIG that night and we slept on her side.

Sadly, her pain didn't end there. A few hours into the IVIG, her hand began to swell and it was apparent that the vein was not a suitable inlet for the medication to travel through. Reluctantly we had to agree to pull the IVIG out and find a bigger vein. And just like that we were back to where we started. On the treatment table. And this time, it was a 6 hours attempt to find a vein. In that 6 hours I cried every single second. Every single whimper of her already exhausted cries.

It became a hospital effort. Doctors were called in from different disciplines, each one renowned to be adept in sticking needles into veins. But every single doctor, surgeon, specialists, failed. The situation became progressively worse and we were literally running around in the hospital to every single department with a doctor because we were running out of time. Even in the operating theatre, the doctors called us in as they wanted to assist. There was one doctor who was regarded as the most skilled in dealing with minute operations. But after an hour, he too gave up. No doctor had the stomach to inflict so much pain to a baby. My wife and I became very religious and understood there and then why there is a God. When all is lost, we turned to God because only a miracle would seem to work at this point in time. Our prayers were answered.

The Kawasaki expert finally arrived and as soon as he saw the state that my baby was in, he ushered us once more to the treatment table to put a needle in. As expected, his first few attempts failed, and as my baby cried her heart out, we started singing her her most favorite songs. Deep down inside I thought of losing her and I wanted her to remember her father singing her songs. After a rest in between, the doctor took a final stab, this time on her ankle because her hands and insides of her elbows have been scarred by needle marks. And it worked. The needle slid nicely into a big vein in her ankle. And we shed tears of joy and I thanked the doctor. he was the savior of my child.

The harrowing nights became cagey nights monitoring closely the vitals of my child. I remembered being in the ward for 5 nights and thinking back I was really amazed at what a human could do in challenging situations. I never had a single spoon of food in me for 5 days and 5 nights. I had not the appetite to start with. I bought my wife some food to keep her energised but she only ate a few spoonfuls. We were so focused on the progress of our child that somehow our body switched off its need to eat. Looking back it was a stupid thing to do as we needed the energy to care for her, but during the moment it was something that never crossed our mind which was filled with attention solely to our daughter.

This has been a long narration but to cut the story short, my child was sent for an echo and two of her arteries were found to have developed dilation. It was in the mild range of aneurysm. A week in the hospital and after full recovery from the fever and two IVIG bottles later, my daughter was discharged, still with the dilations, we continued her aspirin treatment, which I administer every single day without fail, and increasingly became her utter hatred for its taste. After 6 months or so, we had another echo, and the dilation has regressed to an acceptable level. Another echo and it has returned to its almost original diameter. Her doctor who then became our close friend and support made the decision to stop the aspirin treatment and consulted us that she could lead a normal life. Infact, he assured us because we could not assured our own selves.

He showed us a logbook of KD patients from the past 3 or so years. And we were surprised. It was pages of pages of names. We never knew that Kawasaki has affected a lot of other parents. We never heard anyone else lamented on it, nor any support group nor any awareness of KD.

The doctor has now stopped practicing in the state hospital and has opened his new private clinic. He is now our daughter's doctor and we owe him everything. He saved the life of my daughter and is a big part of her life. My daughter is now 4 and I am still the overprotective father. I worry every time she feels unwell. We wrote on her school enrolment form under the medical history : Kawasaki Disease.

She is playful, a bit small for he age. And she often gets hives with swollen eyes. Yesterday she had a swollen lip which was attributed to an allergy of shellfish. But as I am far away I failed to get a single hour sleep. KD is notorious for implanting unhappy thoughts and my hope is for the mystery of this disease to be finally unravelled.

Personally we tried to piece the mystery of what caused it. Some said it is to do with carpetting. We did a month before KD pull out our old wall to wall carpet in exchange for lminated flooring. Some said it is to do with carpet cleaning. We did a month before KD send our duvet covers to the laundry that also does carpet cleaning. But these can just be coincidences. What we worry most is the complications of a KD survivor that are yet to be established.

I end this too wordy narration of mine with a sincere thank you to all your stories. They were the ones I read throughout the recovery of my child. It was hard for me to reminisce my daughter's story and I admitted that I cried throughout. I am a 32 year old man but I cry because it has been the most enduring part of my life. I hope my story can illuminate the need to never give up. Never falter to KD.

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Re: The Harrowing Nights

Post by ENC » Fri Dec 13, 2013 2:29 pm

Hi there -- thank you so much for sharing this story. I too am thousands of miles away from my daughter right now and can't stop thinking about her bout with Kawasaki's in August. Harrowing is an appropriate description. I've never been so scared, shocked, and sad in my life. Thanks again for sharing your experience.

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