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Friday, December 2, 2011

A Vigil

I'm sitting next to my beautiful, perfect JBB. He is asleep but not soundly, he is burning with fever and wakes every 15-20mins whimpering in pain. I soothe him back to sleep each time. I can't stop looking at him, touching him, singing to him, letting him know I'm here. He is not in his own bed but a cot at the Royal Children's hospital in Melbourne. I am waiting to hear if my darling boy has Kawasaki disease and if he does, when they will start treatment. It is an inflammation of the blood vessels in the arteries and in particular, the coronary arteries. If detected early, most children will make a full recovery but complications can include aneurysm and heart attacks (thankfully this is very rare), you can find out more information here:

It is past midnight and after many days of broken sleep and crying with exhaustion this morning, I have never felt less like sleeping in my life. How did this happen? I am still in shock and disbelief and even as I read information about this disease, I cannot think of it in connection with my life loving, big hearted, cheeky son, it just cannot be possible.

It all began with a tired and cranky JBB on Sunday. He hadn't slept well at either of his sleeps (even the fact that he had two sleeps in a day was unusual as he had recently dropped his second sleep) and wasn't his usual sparkling self at the lunch for my Dad's birthday at my little sister's place. He was feverish on Monday morning when I dropped him off at my Mum's place but I had been expecting more teeth for awhile, so I just put it down to teething. That night, we had trouble getting him to sleep and he woke at around 3am and we brought him in to our bed for the remainder of the night. On Tuesday, JourneyMan's Mum was babysitting him and I felt uneasy all day, not because, I was worried about her care, I was simply worried. I called her during the day to check he was okay, I hadn't done that for months. JourneyMan's Mum said that he was miserable all day, had a fever, a bit of diarrhea and really, just wasn't himself. It took him a long time to go to sleep and he woke at 3am again and we brought him into our bed.

On Wednesday, I was home with him all day and he barely left my knee, I gave him paracetamol and he perked up a bit after that but in the afternoon, he was back on my lap whimpering and was roasting hot and when I took his temperature it was 38.9C / 102F under his arm. I called the 'nurse on call' service we have here in Australia and they reassured me that everything was okay, most likely just a tummy bug, they said to call back if he had any further symptoms. When JourneyMan got home, I noticed a lump on JBB's neck and a patch of red, I got JourneyMan to have a look and he said that he had seen it the night before. I was back on to the nurse on call, quick as a flash and once we went through the whole story and explained about the lump and redness, she suggested we should see the GP within 24 hours. I knew that I couldn't go to work on Thursday, I needed to look after my darling and in the morning, I called the doctors office and booked him in straight away.

Wednesday night was a disaster. He slept in our bed all night and clung to me like his life depended on it, all night, I couldn't move and didn't get much sleep, he woke numerous times during the night burning up. When he got up in the morning, he seemed worse than the day before and by about 10am, I noticed that one of his eyes was bloodshot. This gave me a real fright but I was comforted that I was going to see the doctor at about 11am. It wasn't my normal doctor because I can rarely get in to see her booking so late but I had seen her with JBB before so was okay about it. She pronounced that he had a bad throat infection and thought that the infection itself had caused the bloodshot eye and the rash that we had just found on his tummy. She prescribed some antibiotics because she was worried that the lump in his neck was caused by bacteria. She also suggested that I book in to see her the next day but that if he should improve dramatically overnight and if so, I could cancel the appointment in the morning.

Thursday night was worse than Wednesday. He clung to me all night once again and I woke at 4am with a start because he was hot, way hotter than I had felt him all week. I woke JourneyMan so we could give him some paracetamol and he wouldn't go back to sleep for more than an hour. I took him out to the lounge room to rock him back to sleep and sobbed. I sobbed because I was beyond exhausted but also because I knew then that something was wrong. JBB had had a fever now for 5 days and despite being sick quite a few times in the past 9 months, he didn't shake it off quickly like he had previously. We slept uneasily until JourneyMan got up at 6am.

When JBB got up in the morning, both of his eyes were now bloodshot and he also had the rash on his face. I sent a text off to my Mum, letting her know what was happening, I told her 'I am very worried'. The main worried thought in my head came from the fever, he had had them before and I expected it to have gone down overnight, not worsened. She called me back to see what time I was going back to the doctors (11:10am) and said that if I am really worried, I should just go up there, they will normally see you if you are really worried. I pottered around for awhile trying to get JBB to eat some brekky and comforting him and then made a snap decision. For most of the week, I hadn't trusted myself, I thought I was acting like an over protective, IF affected mother who runs off to the doctor at the drop of a hat. Finally, I realized that was a total load of crap and I packed JBB up really quickly and headed off to the doctors.

They were very nice and the nurse saw me straight away after I had explained what was going on. She immediately took his temp, listened to his chest, looked in his ears etc and then called the doctor to come and look at him. This was a different doctor, he is the one that owns the practice (my mum took us to see his dad when we were kids) and he did all of the observations again and then we talked about what to do. I was expecting him to send us off for some tests but he basically said that he wanted to write a note for him to go to the emergency department of a hospital. His thoughts were that he thought it was okay but because it was Friday, he wouldn't be able to get any answers the same day. He also said that he would prefer them to be angry at him for sending him in needlessly rather than missing something that got exponentially worse over the weekend. He said that he needed to be able to sleep that night. He also said that he had learnt over the years to trust a mothers intuition that something is wrong.

He talked to me about the hospitals that we could take him to and because we have private health care, we could take him anywhere. There was only one hospital that I was comfortable taking him to and that was the Royal Children's. I had to take him to the specialists, I didn't want him thrown out only to find out there there was a problem. I called JourneyMan on the way home from the doctors and we agreed he should stay at work, we thought we would sit around in emergency for hours, they would do some tests and then we would be sent home. I called my mum and asked if she wouldn't mind coming and she agreed. I packed up enough stuff for JBB for around 6-7 hours and picked up my mum and we drove in (about a 45min drive from our house). I told her we had to go through the coffee drive through because I was so tired, I needed a pick me up.

We got to the hospital and went through reception. The hospital had just moved on Wednesday to new premises and just the waiting area was impressive, there was a massive aquarium in there and JBB had a great watching the fish until we were called not 5 mins later to the triage nurse. The triage nurse did all of his obs and asked questions and then after around 10mins we were taken though to a bay. This is when I got scared because we walked past a massive waiting room full of people, I thought 'this is either contagious or dangerous'. After a while, the doctor came to see him and said that they thought it was Kawasaki disease but that there were a few tests needed. We had to find a way to get a urine sample, he sat on my knee with some waterproof paper and waited with a cup at the ready. In the meantime, he had an ECG. He finally started a wee and I was able to catch some for a sample, he did not get me at all!

After a big wait, the doctor came to put a shunt in for an IV and take some blood samples. This was the worst part of the day as they had to hold him down (thankfully, they had put some local anesthetic on his arms earlier) but he didn't like it and he was hysterically crying. I sang to him his favorite songs (dinosaur train, the froggy song, stand by me and you've got a friend). While they were still taking blood, JBB fell asleep, poor love was so tired. I called JourneyMan and he talked to his boss and came over to the hospital at about 4:30pm. JBB slept for quite awhile but my mum and I had not had anything to eat or drink since the coffee when we left home.

The doctors from the ward finally came to see us and said that he had 3.5 markers of Kawasaki disease, they begin treatment at 4 markers. We are still waiting for the blood tests to come back and that is where we stand now. Mum went home at around 7pm, JourneyMan went home and collected some things, brought them in and then went home again to sleep. Since then, it has just been JBB and I. It is now nearly 6am, JBB forced me to have a sleep with him at around 3am because he wouldn't go back to sleep unless I was holding him. The fever keeps on coming back and they have given him a couple of doses of paracetamol. I called the nurse in just before because his breathing had become quite labored, the doctor has assessed him and said he is just a bit congested in his nose, it was not his heart, thank goodness. Now I continue to wait to see what will happen next.

As a personal aside, this week has seen my period come full force and with it high octane cramps. I can still feel the cramps and the exhaustion but it is like it is in a person, sitting next to me, not me, my focus is totally on my boy. I can't believe this is happening. I am not religious but I am spiritual and I am praying, I am praying hard. I am pouring every ounce of love into every caress, every sweet nothing I whisper in his ear and every song I sing. One of the songs that I have sung to him since he was born is 'Stand by Me', I sing it to him to let him know that I will always be there for him. This morning, in the dark and lonely hours, it has become more of a plea to him to 'Stand by Me'.


  1. So sorry for your sick LO. Hope everything works out!

  2. That is so scary! Praying that he gets better quickly!

  3. Oh wow. I am having difficulty comprehending all that has happened just reading this post and so can't imagine how you must be feeling right now. I am not the praying type, but will be sending you and JBB good thoughts and hoping that if it is Kawasaki Disease, it has been caught early and JBB will be on his way to a full recovery soon.

  4. You poor souls - all of you. It must be so scary but it's good that he's in the right place with the right people to get him well again. I'll be thinking of you and him and hoping for good news very soon.

  5. Journey Girl:

    Oh my goodness! You must be completely exhausted with worry and anxiety. Journey Baby Boy being at the Royal Children's will be receiving the best care possible...the poor little love. Still this will be so difficult for you, Journey Man, Journey Grandparents & extended Journey Family & Friends. Is there anything your bloggy friends can do for you? Other than wishing our gorgeous Journey Baby Boy a very speedy recovery?

    I know you will manage to push through this exhaustion. Please remember that we are all with you, at least in thought.

    LS x

  6. It's horrible when your child is sick. I hope your DS has a full recovery and that all can breathe easy soon. Thinking of you.

  7. Oh you poor mama and sweet baby! I'm so glad you got JBB treatment as soon as you did and I know you are giving him the tenderest most sweetest hugs and kisses and loving him with all your heart and soul. I'm praying and hoping for healing for your sweet boy.
    I read the link about KD and it sounds like you caught it in time and hopefully he will make a full recovery. So sorry you are just do exhausted and scared. Big huge hugs to you all:)) xxooxxoo
    Please keep us posted, my friend!

  8. There are just no words. What a horrible few days. I can't imagine trying to hold it together under all of that stress and worry. You are doing a great job, and you are a wonderful mama. I am so glad that I know JBB is better now.

    Keep your chin up. It will get better.