This particular 'Disability Diaries' post has sat in my drafts folder for some time. This, I know, is going to be one of the hardest posts I have to cast my mind back over to write. But it needs to be written. I daresay I am going to have to write this in portions, in order to cope with reliving this period as it was one of the most traumatic of both mine and J1's life to date.
The first indication that something was happening with J1's leg, was that whilst laying flat his left leg would 'scissor' across the right one. We would constantly uncross it, but it would fly back almost immediately. The next happened whilst undertaking our physiotherapy regime. When it came to exercises on his left hip we would hear a very distinctive 'click'. After a little while J1 started to wince. When this happened I knew we had to report it.
We were referred to Orthoapedic department for further investigations when J1 was three. The Doctor did a thorough examination and requested some x-rays. I was told that J1 would require surgery and that an appointment would come through to us. Fast forward about a year and we were still waiting for an appointment. Not being thrilled at the idea of him having to undergo surgery I had not pursued it, but as the discomfort for J1 because clearly more painful I knew I needed to take action.
After numerous phone calls it was established that J1 had 'slipped through the net' and that he would be put at the top of the list. An appointment promptly came through for while we were on holiday. After more phone calls a date of 4 July 2007 was confirmed. I sailed along to this date, trying not to think about things too much. I had no idea of what J1 was about to face. J1 had no idea of what he was about to face. In this case ignorance was bliss.
We arrived at the hospital early and I was told that J1 was first on the list so would be going down to theatre around 9am. It had been difficult to ignore J1's indications for food and drink, so I was glad that he would be going fairly quickly. If only that had been the biggest difficultly, we would have been laughing.
J1 was only four years old. His only words were 'Mumma' and 'Hello' so communication was mostly guess work. He had no clue about what was going on. The Doctor came to see us and noted that since the X-Rays were over a year old he really had no idea what he would be facing until he started the operation. Firstly, he said that the 'scissor' effect was being caused by the muscle on the inside of the thigh tightening and shortening. He would need to open the thigh and cut the muscle to try and release it. Secondly the hip, because it wasn't being used for walking, was growing in the wrong way. The bone was forming out of shape. Therefore he was going to have to break the hip, put in a metal plate and reset it. The third thing that may have occurred, I was informed, was disintegration of the ball socket. If this was the case he would have to try and rebuild it.
But it was all an unknown quantity as to how 'bad' all three of these issues had developed. I curse myself to this day for being a coward and not chasing the operation date sooner. Of course at the time I nodded and agreed with the Doctor pretending I fully understood everything he was saying. The only thing I really understood was that it sounded horrendous.
As is standard procedure for operations I had to sign a consent form. The Doctor rattled off all the things that could go wrong, reactions; infections. Words swarmed around my ears as a pen was pushed my way. I looked at the signature spot. I had no option but to sign it, but felt I was signing to say 'Yes, do these awful things to my baby.' I asked the question of 'What if we didn't have it done?' and was told that the hip would continue to deform to the point where even sitting would be extremely painful let alone any type of other movement.
As I signed I realised the true enormity of being a parent. I had to see my child through this. I had to be strong and let them take him down to theatre, happy and smiling clutching his 'Brown Bear'. To hold him while they tried to get a line into the tiny veins in his hand to administer the 'magic sleeping milk'. To be strong enough to let him be whisked off of my lap and ushered out of the door the minute his eyes closed.
I was told to expect to wait about two hours. I would then be informed when he had been taken into the recovery room. As I sat on a plastic chair where his bed would reside on the ward, with my mum for company I felt the sensation I had only felt once before. One of complete and utter helplessness. I had to entrust his life in those of the Doctors hands, just like when he had decided to enter this world eight weeks early. There was absolutely nothing I could do but wait, and hope.
As time approached the three hour marker a nurse finally poked her head in to me. I was expecting her to tell me that I would be taken along to the recovery room but instead she informed me that he was still in theatre as the operation was taking much longer than expected. I was told he was doing well and they would keep me updated.
As the clock slowly proceeded on a further 60 minutes, I was again updated that although still in theatre they didn't expect things to take too much longer, but because he had been under anaesthetic for a long time he may take longer to wake up in recovery. A painfully long four and a half hours after they started, I got the green flag that he was out of theatre. I was asked to go straight along to recovery because unusually he had woken up very abruptly - just ten minutes after arriving - and was in extreme distress and very disorientated.
I was not prepared for what a sorry state he would be in. As I walked in the door I had a sharp intake of breath. Both of his legs were in hip to ankle plaster casts. A pole was attached into the cast across his knees, so his legs looked like an 'A'. Tubes and wires seemed to be coming out from everywhere with various bags of clear liquid hanging from the IV stand.
The nurse got me straight to his bed asking me to let him hear my voice in the hope he would become less distressed. It didn't seem to make any difference. He should have still been coming out of the anaesthetic, it was like he was doing so but in a conscious state. His cry was like nothing I had ever heard him emit before. Pure pain. Pure distress. Pure horror for me as his Mother.
We were in the recovery room for almost two hours before his stats settled enough for us to be released back to the ward. I had been informed, by a visit from the Doctor who had undertaken the surgery that things had been very bad. He had performed the surgery to the muscle on the thigh (incision / scar one). He had broken and reset the hip with a metal plate (incision / scar two) and unfortunately massive disintegration of the ball socket had taken place, much worse than anticipated. Bone graphs had to be taken thus needing a further incision. The Doctor told me that Bone graphs are extremely painful and this would cause J1 probably the most pain in the first few days. Because of this the Pain Relief team had prescribed an anaesthetic drip to be delivered straight into his back for 24 hours.
By the time we reached the ward it was quite late in the afternoon. J1 was still very upset (understandably). I can't begin to imagine the pain and, more over, confusion he was in as I had not been able to explain to prepare him for what he was experiencing. The same could be said for how I was feeling but that was not important at the time. I knew it was going to be a long, slow recovery. J1 could not really talk, he would not be able to tell me where it hurt or how he felt. All he would have was tears and I would have to hope my Mothers intuition would know what to do to help him.
As shots of morphine were administered every 15 minutes, he would doze for about five minutes. I prayed that in his drug induced sleep, at the very least, he would get some relief from the hell he was in. In those few minutes of quiet my thoughts ran wild. I wondered if being under anaesthetic for that length of time could have caused him more brain damage? I wondered if the powerful drugs they were pumping into him would cause damage anywhere else, he was still so small? I wondered how we would change his nappy without causing him excruciating pain? I wondered how he would ever forgive me? I wondered what I had ever done in our lives, that was so bad, that he deserved this?
I wondered those thoughts every time those quiet five minutes happened, for the duration we were in the hospital. In a zombie, sleep deprived state, J1 and I suffered through what seemed like the longest days and nights I have ever known. The make shift bed was never slept in. Most nights I would pass out hunched over the bed stroking J1's hair because it seemed to be the only thing that calmed him.
Recovery had only just begun.