Thursday, 2 April 2015

Croup, kindy and circumcision.

It's Monday and Jayden is doing well. He didn't have a good week last week with croup but fortunately this week he is feeling much better.

Kindy has been ok but with a few setbacks ......
Two weeks ago he stayed home from kindy quite a bit as he wasn't happy. In fact kindy has been trickier than we originally anticipated.

In the beginning it wasn't too bad especially after we changed kindies. But then it turned, and one day when I went to drop him off his little face crumbled and pleaded for me to take him home with me. Of course I did. When he cries for something to stop I don't see a boy missing his mum but rather the little boy that lay in a hospital bed pleading for yet another procedure to stop. And in this instance, I can make it stop, so I did. We went home that day and just hung out together.

The following day we missed as well as he didn't want to go and I realised then that we needed to take a new approach. As much as I would love to keep him home always and any opportunity I have I do, but I also know how much playing with kids his own age makes him so happy.

So I went Back in to see a psychologist that is wonderful and sorted a plan to go with for what to do next. Fortunately the kindy is wonderfully supportive and is happy for me to stay. So now, everyday I go with him, stay, pop out for a coffee and come back and leave when he's ready. All this so that when we are both ready jayden can stay on his own. I have to say it's so difficult to let him go. I worry about him constantly and although he and I were both so brave in the beginning with kindy, when it came down to it, we both just crumbled. I know it's not just about him but also me. I don't have one single bit of emotional energy left to make him do anything he doesn't want to do. I just can't. It's impossible. So hopefully this method which we also used at happy campers will work as well at kindy for both of us.

Jayden and I are both enjoying kindy much more now. He is, knowing I'm not far away and I'm loving watching him happy and interacting with other children his own age. Really awesome to see.

He wasn't well last week with yet another bout of croup. Truly scary stuff. It's also so emotional for all of us. We all worry so much when jayden is unwell and none of us like to see him distressed. His brother was especially worried the night it started and sat up with me helping in anyway he could to help make jayden comfortable. Luke was really just beautiful. He loves his brother so much and jayden loves him back.

It's so hard to see Jayden distressed. When I'm holding him in my arms like I was the night his croup started and wishing the steroids we gave him would hurry up and kick in, he's crying and pleading with me to do something. It's times like these my heart truly breaks. I hurt inside so bad and I'm so scared. I know the croup will pass but my fear of the future is so overwhelming. I wish so much that I had a magic wand and use it to make sure he's never ever sick again. That he grows to be a healthy, happy adult. I so wish for that. More than anything. That all my children remain well and happy.

Jayden has yet another procedure planned in a fortnight. He has to be circumsized. We really didn't want to do this but we have got to a point where the positives by doing it far out way those reasons not to. And of course one of our main reasons not to is just not having to put him through another procedure. However we know it has to be done. So why is he being circumsized? Well, When he was going through treatment, part of his protocol was to have a catheter inserted into his penis at the beginning of each chemotherapy round. The reason for this was if he wees it will prevent the chemotherapy from burning his skin. All shocking. And he was so young at the time. Because he was so young his foreskin should have never been pulled back to insert the catheter but it was, which tore the skin and caused scarring. This happened each time and our specialist believes this is why he now has issues with his penis. The scarring has prevented the foreskin from opening properly and everytime he wees it blows up like a balloon. he only has a tiny gap where the wee can come out. I thought This would be ok with time however it can cause infections that can become serious.

I wanted to write about this so that if their are any parents out there that have little ones in treatment, make sure the medical staff know how to insert a catheter correctly in a small child. Their foreskin should never ever be forced back. I know there is already enough to worry about after treatment so you really don't want to add to that list. I wish we had of known that back then.

Anyway, it's nearly the end of the school term and I'm so happy to know my kids will be home everyday soon. Love the school holidays.


It's now Thursday, last day of the term. Love the school holidays.

It's 1:30 in the morning so that means it's actually Friday. I can't sleep. Jayden woke me as he's sleeping very restlessly tonight and when he does, I find myself laying awake worrying why he's so restless. While I worry about him, visions of the past enter my head and before long I'm in an awful state of panic. So I'm up now in the kitchen finishing this blog in the hope that I can switch my mind off. Not likely, but by writing my thoughts down at least they are in some form, out.

We received the letter from PMH today letting us know when jaydens next MRI is. The gnawing feeling in my gut returns and I'm scared out of my wits once again. It's not that it stops it's just that I've become good at burying it within myself and this letter just made it all come rushing up.

Then tonight. Restless sleeping and I'm worried. It's So hard not to be scared. Wish I could sleep.

I'm going to finish this now as I need to try again for sleep.

Hoping and praying everything is ok with Jayden, and always will be. Love my little man.

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