Its hard to describe what it was like at PMH. We had 4 children. Charlie came home from his dad's on Monday arvo after school. Tameka, my step daughter came home on Wednesday after school and Mikey had a twin brother who couldnt stay with us because I had to work evenings and my partner had to work mornings. It was a crazy juggle trying to provide Michael with the care he needed while still making sure all kids were looked after and loved. If it wasn't for my partner's family we would have all suffered alot. But Marion and Brendan held us together with their support and encouraging words and I will be eternally grateful to them.
Michael was afraid of the nurses and the doctors. Everytime they walked into the room he cried and I had to assist when they did ops and tests. After an mri, blood work and x rays they said that Mikey did have a narrow hole where the spinal cord goes, far too narrow for normal and his c1 vertebrae had formed far to forward which is why the spinal cord was pinched when he hit his head and hence was paralysed. By this point his body was getting back to normal, but his left side was not moving much at all. They told me they would have to operate and remove the bone that was pressing on the cord or else he could die.
The day I was asked to sign papers for the operation I was a mess. There were times that i had to hide behind the curtains or behind doors because as soon as he saw me he cried. I had been spending the night at hospital sleeping in a chair and still working 5 hours a night while my partner came in to look after Michael. That day I had held Michael for 4 hours straight because he wouldnt let me put him down or let me sit in a chair with him, plus I had to manoever the drip and the nurses were to busy to notice I was falling apart. To be honest that day one nurse pretty much ran away, she didnt want to have anything to do with his crying. The doctor came with the papers and I said 'Take him!' Then I hyperventilated and bawled my eyes out. I was so dissapointed that I had lost my control but my arms hurt so much and I was so tired of handling him by myself. Once I could breathe I grabbed Mikey again and walked with the surgeon to sign the papers. A nurse followed and offered to take Mikey so me and the doctor could talk. She told me that she was really good at what she does and that she does it every week on people but there was a chance that he could be paralysed from the kneck down or die. I signed the go ahead because if we didnt do it he could die when he got older just from a little knock.
I went back to the room and the nurse who had conveniently ran away before was holding him and he was fast asleep! I was thinking thankgod! They must have told her what was wrong with him because she had changed her attitude totally and she was more in tune with us from that point on. I told the nurses I couldnt stay at the hospital anymore because I needed a rest at night and they said that was fine, but my sister, Marion and Brendan visited him whenever they could while he was alone.
His spinal surgery was on Thursday and he was such a good mood when I took him into theatre. As soon as he chirped and smiled everyone fell in love with him. I kissed him and said goodbye. I didn't cry because I knew he would be better afterwards and God wasnt going to take him from us. I had so much faith in him to be strong too. I said to Damian that we shouldn't wait in hopsital in the Friendship room because the other couples looked too sad and that wasnt going to help us, so we went out for lunch and drank champagne. We were happy because Mikey was going to be well soon and everyone had prayed with thanks to god for taking care of him. I was adamant that people pray that way instead of praying with sadness.
We got a phone call 3 hours later. They said Michael was in recovery and he didnt even need a respirator, he was doing fine. We raced back and he slowly woke up out of his daze but every time he saw me he cried for a cuddle but it was hard because my body was worn out and I couldnt hold him for more than 1 minute. So I hid behind the hospital machines and watched as his Dad cuddled and talked to him and joked about Mummy having to hide to keep him calm.
Michael had fasted nearly the whole time from Sunday to Thursday so an hour after the operation he ate so much food the doctors were impressed. Again the following morning and every mealtime after he couldn't get enough food into his belly. His body was losing its paralysis and he was making headway in crawling and getting back to normal. Then we found out that not only did he have 3 types of displacia, he had a rare genetic bone diease called Mucopolysaccharidosis (MPS).
He stayed in hospital for a week after the operation to find out which type of MPS he had and also to test his twin brother, Andrew. During this time Andrew had been staying with family and I had seen him only a handful of times for a hug. Little did I know he had the same rare bone disease and with lack of a proper routine was begining to get dark around the eyes, very irritable and dizzy from too much walking. I didnt realise that these were symptoms of MPS but I knew the sooner we got Andrew home the better he would be.
Before we got discharged we learnt that both boys had MPS IV but we are currently wating to see if its A or B.
No comments:
Post a Comment