I have a secret to share.  Not an earth shattering secret.

Do you want me to tell you?

Well, reluctantly I will share.

The secret is this – I can ramble when I want to.  I just don’t think anyone will read my ramblings.  So I guess, if you don’t want to read my rambles then this isn’t the post for you.

If you had have asked me yesterday whether I felt positive about Moo’s surgery, I would have honestly told you that I regretted signing the consent forms.  Today, I’m still sitting on the fence.  I am disappointed that my expectations were so different to the reality.  I am disappointed that one of the main drawing points to Moo having the surgery – being that he would be able to weightbear and therefore assist with transfers – may not eventuate.  And I’m upset by the events that have occurred in the last week.

You may remember my last post on surgery contained the learnt pearls of wisdom being KEEP ON TOP OF THE PAIN RELIEF.  Cheryl quite rightly pointed out that some heavy duty drugs are needed to do this.  As a parent, I know that I don’t feel comfortable with Moo being on addictive drugs for such a long period of time.  Uncomfortable or not, what is important is keeping Moo and his pain at a manageable level.

With hindsight, we didn’t do this for the time period that he spent in the spica.  We had so little sleep during this time.  And he had even less sleep than we did.  Despite being told that the spasms would subside in one to two weeks, they never did.  With hindsight, I should have done something about it then.  However, we suffered through the six weeks thinking that everything would be alright once the spica was removed.

Wrong.

Big mistake.

To compound things, it seems that an ever so small mistake happened at the hospital when the spica was removed.  That mistake being that we were sent home without Doctor review.

With hindsight I should have known that following the spica removal I was receiving dodgy advice.  We (being hubby and I) were told to go to our GP to get a new script for pain medication.  At the time I was confused as we were in a hospital and why couldn’t we get the script here.  When you think about it – what GP is going to write a script for valium for a 5 year old.

Then there was the advice to put leg wraps on Moo’s legs.  At the time, Moo’s legs were stuck in exactly the same position that they were in the spica, bent and up in the air.  I was wondering how we were ever going to get wraps on.  The other piece of advice was to stop treating him as if he was in a spica when we handled him.

So after a quick bath for Moo, we were told that we were right to go home.  Then the nurse came in and told us that we were right to go when we were ready.  And then she went and got the paperwork for us to sign before we left.

With hindsight, sirens should have been going off in my head.  We hadn’t even seen a Dr.  I am really disappointed in myself for allowing them to send us home.  I should have said something.  I should have asked why we couldn’t get the pain medication script at the hospital.  I didn’t.  I signed the forms and we came home.

Now I know that the no spica is even more painful than spica.  I know because Moo screamed the first night.  I know because the lack of sleep continued.  The spasms continued ferociously.  We sent Moo back to school on Monday.  The message coming home to me was that when  he was reviewed by the education PT, there was concern regarding his recovery and pain levels.

We went to hydro on Tuesday.  When I picked Moo up from school, he was just about falling asleep in his powerchair.  At hydro, the PT expressed to me that she was very concerned about his pain levels and that she wanted me to ring the surgeon and be persistent.

And then she also added that she had received an email from the hospital saying that we had taken Moo from the hospital before the surgeon had reviewed him when the spica was taken off.  I explained to her that we had been sent home.  She told me that wasn’t how the email read and offered to send it to me.

I got on the phone to hubby.  And he started the process that wound up with me taking Moo to accident and emergency at big city hospital an hours drive from home.

As a lawyer, we are subject to regular ongoing legal education.  We have compulsory subjects that we must do each year.  This includes seminars on protecting yourself against claims.  There is a story that quite regularly comes up at the seminars about a surgeon and an anaesthetist.   The surgeon has a wonderful bed side manner and thoroughly explains to the patient what is going to happen and when.  The anaesthetist is a right bastard and is rude to the patient.  Operation ensues.  Patient ends up with complications.  The anaesthetist did a faultless job during the surgery and the surgeon’s performance is less than satisfactory but when it comes time to institute legal proceedings – the proceedings are brought against the anaesthetist.

The story is about the importance of communication.  During the last few days, I’ve thought about that story many times.

At the hospital, x-rays showed that everything looked okay.  I was told that spasms were to be expected and it was implied that this was all my fault for taking him home when the spica was removed.  We were again told to go home.  When I asked how long the spasms would continue, I was told a couple of weeks.   And I could see history repeating itself.  The weeks of no sleep and seeing Moo in pain finally got to me. I fell in a heap and started crying uncontrollably.  Through my sobs I managed to get a request to see a pain specialist (anaesthetist).  I was told that the wait could be quite lengthy.  After speaking to hubby, the decision was made to wait.

The ironic thing was that I hate hospitals.  The less I have to go there the better. And now I was refusing to leave.

The pain specialist arrived a couple of hours later.  He pulled up a seat and sat down opposite me.  I tried to stay calm as I told him what my problem was.  I was expecting another brick wall.  Half way through my ramblings, the anaesthetist picked up his seat and moved it closer to me.  He was listening to what I had to say.  He was polite and kind.  He gave me an indication of what he was going to do when he left me and then he went and did it.

So, the end result has been this.  Moo is still in hospital.  He is on additional pain meds which make him look a bit drunk.  His spasms have subsided so that he only had half a dozen last night as compared to the 21 spasms the night before.  He has gotten some sleep.  He has started eating again.  And he now has movement in his hips.  His legs are getting straighter.  And he doesn’t complain of pain if I pick him up.  He doesn’t complain of pain if I roll him over.  He is happier.  And so is hubby and myself.  We have all gotten some sleep.

The moral of the story, if there is one, is to keep the pain levels under control following surgery and beyond.  Don’t accept it as being “normal”.  Just because your child has a disability doesn’t mean that pain is an expected outcome.  That pain in itself can hinder recovery.

I don’t want to play the blame game.  The miscommunication for whatever reason happened and it is necessary to move forward.  I’m still smarting from the comments made to me along the way.  I thought it was obvious how much I love Moo and that he is very much my priority.  For the record, I love that child so very very much.  He means the world to me and it has been incredibly difficult seeing him in pain.

And if you have managed to read all this way, I can share with you his latest Moo-ism.

Moo was on the speaker phone to his brother Master C who was whining about how come Moo had gotten a new toy.  Moo started trying to press all the buttons on the phone.

“Daddy, how do I hang up the phone?” he asked.  ”I’m sick of listening to Master C’s nonsense”.

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