When Brain Surgery Suddenly Seems Like a Good Idea… Part 3

Our knucklehead he was a little more mobile every day, and walking into ICU and seeing him sitting up on his own almost had me crying with joy. His PT and doc encouraged him to start walking and go a little further and further each time. He lucked out when he got a private room after his ICU stay – he could sleep to his hearts’ content with no noisy roommates or machines!
By day four it didn’t hurt so much to chew anymore, so he could have something other than soup and he was thrilled! He also asked for his laptop once he moved out of ICU ‘coz he said the hospital TV was boring. 
Dry shampoo spray was awesome as he wasn’t allowed to wet his surgery cut! He felt better and stronger every day, but he couldn’t go without pain killers for more than a few hours.
After 7 days in hospital, including 2.5 days in ICU, he was really glad to be home. He could at least “shower” on his own after needing help in the hospital, and we gave him a haircut to match the shaved square around his cut.

He was sore! So very sore! I cried myself to sleep a few times in the weeks following his surgery ‘coz my baby boy was in so much pain, and waking up in agony in the wee hours of the morning. And he got VERY bored, and his back hurt from walking funny because he was trying not to move his neck, and all I wished was to make it all better.  He wasn’t allowed to bend over, or lift anything heavier than 3kg, and a car ride was absolute torture for a good day afterwards – the involuntary movement of his neck in the car made him so sore!

The cut on the back of his head was 10cm long, and he had 17 stitches – they came out ten days after his op. How incredible was his progress over two weeks!

For those who have asked – his diving career did not cause or aggravate the condition. He was born with Chiari Malformation (we didn’t know it), and the syrinx in his spine has been growing for the last 20 years or so. And even with the Decompression surgery, he is not cured – there is no cure for Chiari Malformation and Syringmyelia – and he has a looong six months to a year ahead of him of taking it easy and recovering. And waiting and watching to see if the Syrinx in his spine shrinks enough – its this that caused the loss of sensation and pain in his arm and head.

He is so much better now, 111 days since his surgery.
He is still battling with a little pain behind his eye from Occipital Neuralgia, but it is much better than when he started regaining the feeling in his face and the back of his head. And whilst he has regained most of the feeling in his arm, neck, and face, the tips of his fingers are still numb. He has another MRI scheduled for the end of June, five months after his operation, so we can see just how much the syrinx has shrunk.
I am praying for a miracle…

When Brain Surgery Suddenly Seems Like a Good Idea… Part 2

So the knucklehead has had the Chiari Decompression surgery.

He went into theatre at 11h30 on Friday morning, and they wheeled him out of recovery at about 16h30.

The procedure took about 4 hours, and my mommy darling and I spent the day at the hospital to wait.

He was asking for me as soon as he started coming around – very disoriented and scared and in a lot of pain.
It broke my heart to see my baby so afraid and so sore.
He grabbed my hand and refused to let go until we got to ICU, and then I had to wait outside while they hooked him up to everything. We were allowed to spend about 30 minutes with him after that, and then we had to leave and wait for the next visiting “hour” (its only 45 minutes long at night).

I saw the Neurosurgeon after he had checked on him in ICU, and he said he was happy with everything, and that he had been able to remove a smaller piece of the skull than he thought he would have to. This is great.

He is still in ICU, probably moving to a normal ward tomorrow. He’s in a lot of pain, but the BP cuff on his one arm has been removed, the oxygen tubes in his nose are out, one drip has been taken out, and the electronic pressure sock-things have been taken off his legs, so he’s a little more comfortable. When they move him tomorrow the catheter will come out and the arterial line will come out. The central line in his neck will stay in, just in case they need a drip.
Incredibly, he has already regained the feeling in his right arm and chest, in fact his skin is so sensitive he twitches at the slightest touch. Hopefully this will ease in time, and the crazy itch he used to get around his right eye has stopped.

He’ll be in hospital till about Friday, and he has several weeks of recovery ahead of him, but he’s better and stronger every time we see him. He’s arguing with me now, and wishing the ICU staff would just let him sleep! He has been able to sit up straight, and he’s gradually moving his head and neck a little more. 😀

We are exhausted from driving up and down to the hospital several times a day, thankfully I don’t have a lot of orders pending and I am going to keep it that way for a few weeks until he is properly okay on his own.

Thank you all for your love and prayers!

When Brain Surgery Suddenly Seems Like a Good Idea… Part 1

Never one to do things in small measures, is my knucklehead.

For a few weeks he had complained that his fingers were numb, and it quickly spread up his arm all the way to his neck and the side of his face.
We went to our usual doc, and she quickly referred us to a Neurologist. Thursday we saw the Neurologist, and she examined him and found he had lost feeling in his arm and chest, as low as T4. She was concerned so she sent us to book an MRI.

Friday morning he spent a couple of hours in the MRI, and the Neurologist phoned us a few hours later and said it was what she had suspected and she was going to try and get hold of a Neurolosurgeon. We went back on Monday morning for a quick chat with her so she could explain what the MRI showed.

The knucklehead has Chiari 1 Malformation and Syringomyelia.

In the simplest terms, it means that the base of his brain protrudes from his skull, putting pressure on the brain and spine.
He was born this way.
Some people can live with Chiari 1 and never need treatment – the complication for the knucklehead was the formation of a Syrinx inside his spinal column, which extends from the base of his brain to T8. This is a fluid filled cyst caused by the Chiari, and it has been growing in his spinal column for years. It is this cyst that is causing the loss of feeling.

We saw a Neurosurgeon on Tuesday, and he has booked the knucklehead for surgery on Friday afternoon. Its called a Decompression, and this will relieve the pressure on his brain and spine, and the Syrinx should then be reabsorbed over time. This takes months, and its different for everyone.
The important thing is stopping the progression of the nerve damage, and hoping for no further complications.

Its fucking scary. I am battling to keep my brain from spinning out of control because I have been reading up on it. My darling Glugster is my rock, and keeps me sane.

My precious knucklehead is like me. We tend to clam up and want to hide away when we’re dealing with something big and scary.

I am terrified. We are terrified.

Being an “Old Lady”

When my now 26 year old son* was growing up, we had many, MANY conversations about sex and where babies come from and all sorts of things – I decided early in his life that I could either suck it up and be age-appropriately honest with him if he asked me a question, or he’d learn bullshit elsewhere.

One of the conversations we had was about PMS, and as a result of that conversation I have been able to warn him when I am PMSing, give him – and my Glugster – a heads’ up so that we could avoid a “spontaneous confrontation”.

It has worked well for us, and thankfully I usually only had a couple of really “bitchy days” a month. 😛

Recently we had another conversation, different – but along the same vein – as I am officially peri-menopausal.
Yup.
It intensified about a year ago, and my gyno doesn’t think it will go on too much longer as my ovaries can now only be seen with an ultrasound! :/
My cycle has gone bezonkers, I am battling night sweats (literally waking up with my pillowcase drenched, and sleeping with a frozen 2L bottle of water at my feet), and I am BEYOND emotional!!
Emotional doesn’t begin to cover it… And more emo than moody, though I don’t know which is better.
I was never one to cry. Not in movies, and not in front of other people, and NOW I cry at the drop of a hat. Nature programmes on TV have me crying over the fawn being chased by a wolf. Facebook statuses about animal abuse reduce me to tears. Other people’s sadness makes me cry.
And I cry every day over losing my precious Riddick – although that is real heartache over the loss of my baby boy, not just irrational emotions…

It drives me nuts!

Anyhoodle.

I’m not going to be taking any hormone supplements or going on any kind of treatment unless I drastically need to for my health’s sake – I’ve lived with it so far, and anyone who knows me knows how I LOATHE the heat and have always had a fan with me, so I’ll just stick it out.

Here’s hoping my family can stick it out too…

 

 

*OH MY HOLY FUCK WHEN DID THAT HAPPEN!?!

Being Concerned About Children’s Pictures Becoming Memes

Picture it. You are scrolling through your Facebook or Twitter feed one morning, while you sip your first cup of coffee, and suddenly… there’s a face you recognise.
Its an image that has been shared by a Facebook “friend” you have only a vague memory of meeting or ever speaking to, who found it on their friend’s feed – someone you don’t know at all.
Its been liked, and commented on, and shared numerous times already by this friend’s friend’s friends – never mind the attention it got when it was posted on The Divine Side Of Parenting, or the Dads Who Babysit Badly Facebook page*.

Its your child’s face!

It’s YOUR child!

Its the picture you took before cleaning up the mess he had made, ‘coz it was so typical and funny and you knew your family would get a laugh.
Its the picture you took because your little princess looked so cute all pink and smiling on her tiptoes after her bubble bath and you knew her granny would love it.
Its the picture you took ‘coz they were smiling in an especially cute way, like they had just been mischievous and your timing was perfect.

And now it has a caption on it. In bold white text.

There are quite a few very well known memes on the internet that are made using pictures of children. They have many different captions ‘coz there are some very clever and funny people in this world. Some of those captions are mean and crass and offensive.
And they are on the internet forever.
You’ll know them if you see them (I have deliberately blurred the images so they won’t be shared yet again). Do you think their parents shared them as memes, or in the hopes they would become memes? What about when these children are Googled by prospective employers one day? The internet doesn’t go away. It can’t be deleted.

You’ve seem them before, haven’t you? You may even have commented on them, liked them, and shared them and thought nothing of it.

Think before you post pictures of your children online. It doesn’t matter if your Twitter feed is private, or what your privacy settings on Facebook are – they are changed all the time, nothing is safe.

And remember that pictures of naked and semi-naked children are considered child pornography when posted online in South Africa. Yes – even babies, and yes – even when posted by the child’s parents.

And I don’t give a crap how justified you think your cause is – you may NEVER post pictures of someone else’s naked children without their permission!
It was an incident exactly like this that got me onto this subject today – a woman photographed a naked child, and shared it publicly on Facebook because she didn’t like the circumstances under which the child was naked – she was all “I won’t rest until I find out what was going on…” and “I won’t rest until I find this child’s parents…“.
This is not how you take action, FCOL. How dare you.

*not actual Facebook pages

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