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6th of January 2010

The 6th of January was the first day of our Hospital appointments for the year. This day turned out to be a very busy day packed full of appointments.

It started with an 8am pick up by the hospital transport (dont look at the date on the photo as we have needed hospital transport a few times) with the friendly and chatty Roy.

930am was an xray of Samuels femur as it was broken the end of December last year, but wasnt plastered at that time as it was so swollen.

He was then reviewed by the Orthopedic Surgeon

He was plastered straight away with a sexy black number…

Samuel then at 1030am had an Intratheical Baclofen Pump Refill. (Sorry if the spelling was wrong). I will put up a video of the refill being done soon. I have to edit it and take out some of the conversations on it for privacy reasons.

At 12pm Samuel had an EEG to check some funny eye movements that were new to rule out they werent a new form of seizures he was having. I will put up a video of the EEG also. I couldnt upload it today, Im doing something wrong, Im still learning to master the computer. I will get there.

Our last appointment for the day was to bi-valve Samuels cast. This meant that the cast was cut in half then reattached with velcro. In the hottest stand out colour available. This was Taylors choice, as we allow her to chose some things for Samuel at his Hospital visits so she doesnt feel left out.

Our time of departure from the hospital was at 2pm. Our wonderful driver Roy safely delivered us home in the Hospital Transport as Samuel still cant sit in his wheelchair because of his broken leg.

Michael then comes home a few hours later with a mid-life-crisis on his arm.

That alone was enough to top off an exhaustive day….

Much more acceptable than an affair even though I despise tattoos….

Thank you for reading my blog

Please leave a comment.

Jo-ann XXX

1st day into reality…April 2006

Leaving Intensive Care was traumatic in itself, but when you had been prepared to go to a brain injury ward and even had a tour around in that ward, being told an hour before you go there that you are now going to a toddler ward made us feel very uneasy. CT Ward (Commercial Travellers Ward) was a ward that covers all aspects of the brain, ranging from tumours of the brain, spinal cord, aquired brain injury, traumatic brain injury, spina bifida, brain injury from birth, seizures (epilepsy) for example. We were told how wonderful the ward was and that they are used to seeing survivors of drownings, so our apprehension of going to the CT Ward was lessened.

Instead we went to Hunter Baillie Ward (HB) which back then was mainly for toddlers of really any type of illness. I was so worried Samuel would be forgotten about being down there, but there was nothing I could do about it. We were wheeled into HB and was at the reception desk awaiting a nurse to tell the Bed Porter which room Samuel was going to be in. I noticed how young and vibrant, full of energy these nurses were, I hoped they were friendly and caring towards Samuel.

Within seconds we were ushered down the ward corridor into a large 4 bedded room. There were no doors on the room, for some reason I needed doors on the room. Maybe it was noise overload, maybe it was protection or maybe I felt Samuel was too exposed, people could see him and stare, I hated people staring at him. Its any wonder people stared with how bad his spasms were and the horrible noises he made with the spasms.

I met a couple of the Nurses when Samuel was due for different things. At that early stage we were not up to date with medications or even feeds. I just felt helpless, out of my comfort zone, still in shock, still waiting for Samuel to just wake up and talk and try to get out of bed. He needed to eat he hadnt eaten in Intensive Care, he was only fed through his Nasal Gastric Tube and being fed Pediasure, a type of milk. Why cant I feed him, Im his Mummy its my job to look after him and feed him, he was such a huge eater just 10 days ago.

There were 3 other people in our room. Accross from us was a mother talking but nearly shouting down her phone telling her friend what an awful night she had had as there were so many alarms beeping and kids crying keeping her awake and that she had to wait another 2 more hours before she was going to be discharged, she was saying “Its been the longest 18 hours of my life”. I kept thinking of how lucky she was. Next to us at the window was a man and his little girl, she was a tiny little thing, with masses of blonde hair, so thick and long her father would brush it tenderly and put it into 2 ponytails. I knew there was something wrong with her, some sort of disability, but I didnt know what. She seemed very familiar to the Nurses, I thought she must have been one of the Nurses Kids and that was why the father was there alone. I cant recall who was in the bed diagonally from us. The little girl and her father had all my attention, he was so attentative towards his little girl. It was really nice to see.

I had noticed going down the corridor to our room, a gorgeous little boy who was very young, about 10 months old. He was all alone in what I thought was an isolation room. He had big round eyes and a big bulging tummy with very skinny arms and legs. I thought he looked like a starving African Baby that the world vision has ads for. He was adorable, he was hooked up to a few machines, he was lying on his back drinking from his bottle with 1 leg put up onto the sides of his cot. I wish I could talk to him, I miss talking to my little boy. He was all alone, I felt all alone. He watched me walk passed him, he smiled at me still with his bottle in his mouth. I instantly felt a connection with him.

The next day the little boys mum came to visit him, she had balloons, cake, presents, and lots of children with her. She dressed the little boys room with party streamers and the balloons. It was his bithday he was turning 1 today all the kids that were with her were very familiar with the Hospital and the Staff. The Nurses even joined in on the party, he must be another Nurses son I thought. His mum came in our room with cake for us and the dad and his little girl, who was she, she was very friendly and told me her sons name was Lleyton. Then the next minute she was gone, it was like a whirl wind. The little boy was gone also but his presents were still there.

The little girl in my room was given a bath by her Dad, he seemed to cope very well with his Daughter, I didnt mean to stare but I was compelled to. He didnt even notice my staring thankfully, I was doing exactly what I didnt want people to do to my son. In walks a woman with a hippyish laid back air about her with 2 children, she was the little girls mum. They were 2 loving parents and the little girls big brother and sister started climbing on her bed with her, it was so sweet. The little girls name was Harmony.

We were then whisked away to another room not sure why but at least it had a door and we were right next to a window. There were only 1 other bed in this room which was being occupied by a tiny little week old baby named Mohammed. His parents were Muslim, a very nice friendly couple. We shared the room together for about 10 days and thankfully they only came for a few hours a day which meant that Michael and I could talk and have a bit of privacy to grieve or argue and come to terms with our situation.

I had no idea that that room would become our home for the next 3 and a half months. The therapies and treatments and the amount of Doctors that would swoop upon us in that time. Harmony and Lleyton evolved into a big part of my life that has changed me forever, and I am thankful to their families and their friendships.

The next few posts will be a catch up of this year so far then I will be back to discuss the reat of our 1st month of Samuels and our Journey into our new lives.

Thank you for reading my blogg.

Please leave a comment.

Jo-ann XXX

Transition from PICU to a General Childrens Ward


From the 9th of April 2006  Samuel  was transferred to the Childrens Hospital Westmead (CHW)after being stabilized by NETS (Newborn Emergency Transport Service) after being at Nepean Hospital for a few hours after his near drowning. I was still numb all over and in disbelief, I felt I was walking in a cloudy haze and watching some stupid horrible movie of heart ache. I went with whatever the Doctors said, but also half not listening to why my baby was being transferred to the Pediatric Intensive Care Unit (PICU) at the CHW.

On the way to CHW, NETS was driving so slow down the highway. There were no lights and no sirens, it was dark outside the van, but inside was lit up like daylight. All the other cars were passing us like we were standing still. Occassionally in the traffic the cars were going our speed, they could see inside our van, they could see my son, I was getting so angry about that, I wanted to yell at them for staring, how dare they stare at my son. I felt very self conscious, very uneasy, hurry up get him to hospital, get him to safety. Are they driving slow because they think he is dieing anyway, well he’s not, not my son, so hurry up.

We arrived at the NETS base at the CHW, we had to go up a lift. When the lift door opened and I stepped out all I could see ahead of me was one of the longest corridors I have ever seen. It looked like it went forever, had I died also, was this the walkway that we hear about with near death experiences. The walkway was very cold, it felt like death, I didnt like it there. Every step felt like 5 minutes, 10 minutes, 15 minutes, 20 minutes, it felt like forever before we went through another doorway, why werent we running as this IS an emergency. The next doorway was the busy, noisy Intensive Care Ward.

The Fire Brigade Chaplains met us there, it was great to have two more faces that were familiar to me. My friend got there before me as she was able to drive there at the normal speed limit. At first when we arrived Samuel went into his room with only the Doctors for a full assessment. I had to sit outside his room and watch the Doctors from the doorway, only occassionally making out what they were saying. That was when Michael arrived, from being away with work,  it was certainly not a reunion I had hoped for. The Doctors then came out and spoke to Michael, I had no idea what was said other than “your son will be lucky to make it through the night”. We were then allowed into Samuels room where he was hooked up to every machine imaginable, that made lots of different noises for all sorts of reasons.

My Mother arrived, Samuel was her first Grandson. She faked being strong, which was good, I couldnt deal with someone crying infront of me that day. It was very late at that time, my eyes were sore from taking in way too much trauma and information, from crying and also from pure exhaustion. I kept being told to go to bed, how could I go to bed and leave Samuel. I had to stay, what happened if my baby woke up and needed his Mummy and his Mummy wasnt there. What if Samuel died because he gave up because his Mummy wasnt there for him. My thoughts were playing havoc with my logic. Things were starting to get too real very quick, the thought of leaving Samuel to “indulge” in sleep was terrifying the hell out of me. The PICU Secretary gave Michael keys to a room with 2 single beds in it for the two of us, there was NO WAY I was going to bed.

Mum knew that I was not going to leave my son alone, so Mum said she will sit beside Samuel the whole night and if anything happened she would come and get us as we were only 4 doors down from Samuels room, my friend offered to stay with Mum also. There was a 24hour Nurse monitoring Samuels every move and vital signs right at his bedside also.The next I knew we were told to get to bed or else, after all the reassurances in the world, I reluctantly went to bed. I was up 3 hours later at 6am, I dont know how I slept but I did. Samuel had no changes in those 3 hours I wasnt there. Mum stayed another few more hours then went home for a sleep. She told me she would do our night shifts at Samuels bedside while we had our sleep at night and she would sleep during the day. I was very thankful for that.

My best friend flew down from Port Macquarie, I was so thankful for her being there, I really needed her with me. She helped me from stopping me from just “losing it”, I can say anything to her, take it out on her, cry, yell, scream, whatever and she understands me and knows how to calm me and talk to me, she is someone I can listen to. She was what I desperately needed at that time. Michael had enough to think about for himself than to be able to be there for me. We were there for each other but it was like we were also distant from each other.

I kept whispering into Samuels ears little motivation talks that only my baby could hear. I kept saying to him that he has so much to live for so he cant give up. I also kept saying to him that no matter how he ended up I would love him forever. I would say to him he needs to live for himself and not for me, that if he did decide to live he had to fight to be here, I said it was up to him. I told him if he survives I will never give up on him no matter what. I also said if he decides that this is all too much for him he can go, its ok, we will be ok, but if you stay you need to fight like hell. Samuel listened and decided that he was going to fight like hell….I had no idea how much of a fight he would have to face over the years.

After an MRI which showed 3 small areas of damage in the Basal Ganglia (base of the brain) and an EEG which showed brain activity the Doctors decided to take Samuel off  life support. We were so happy and excited. This meant that Samuel had a good chance that he was going to survive and with minimal brain damage. We had very high hopes, as tubes were also starting to be removed and we were able to handle our little boy a bit more. Samuel only needed a few hours of oxygen once taken off life support which a fantastic sign. Some of Samuels drugs were reduced also which then he started those horriffic spasms where his whole body would tense up and his head and heels were the only body parts touching his bed, he would look like a big “C” shape. It was very distressing for him and extremely distressing for us to watch helplessly. We would have to tie his arms to the bed to stop him from bashing himself, it was truely awful. Cuddling my baby when he would go into a spasm would be like holding an ironing board. It felt like he war going to break all his bones while on my lap.

I made it my goal to know each and every staff member that had anything to do with Samuel, ranging from Proffessors to Nurses to Therapists to cleaners. If we were going to be here for a while I needed to talk to these people and have conversations with them about anything and nothing. I needed to know them by name and appreciate what they do for us and my son. Im a chatty person anyway (as you can tell by my bloggs….hahaha) so it came easy to me and I think it helped those around me also. I am so thankful for each and every one of those Hospital staff for I have made some great friends out of them. Little did I know how often I would see them all.

We were inundated by friends visiting in the PICU. I was very thankful for my friends, I felt that they all cared and was there for my family and I. Sometimes I was the one comforting my friends because they were crying about Samuel. I think I must have been on overdrive. I didnt want to cry infront of them as I felt that they may not come back if I cried. I felt I had to be strong for them, being strong for them was very exhausting though, it took alot out of me. I actually had to fake being great for so many people, I didnt want to be weak and show emotion in public. I could do it in my Hospital room in private or with my best friend but not in Samuels room or in public.

Samuel was becoming more stable, he was moved into a 4 bedded room still in PICU, he still had 24 hour nursing but she was also the nurse for the child next to Samuel. It was a good sign but it was a little unnerving going into a room with 3 other kids with varying illnesses. One child had brain surgery, another had open heart surgery, another one had liver surgery. These kids were very sick, they were constantly crying, why wasnt Samuel crying. We became used to everything in the other room, now our emotions were increased because these other kids were crying because they were sick and our little boy was silent and staring.

After 9 days in PICU, Samuel was stable enough to go to a normal pediatric ward. I dont think I was ready but when would I have been, probably never. Samuel was going to not have a nurse with him 24hours a day. He would not be monitored continuously, what happens if something goes wrong, what do we do. Again I was petrified, but it was such a good sign that he was being discharged from PICU and be able to get on with healing and therapies. We had no idea what laid ahead of us in our naive wisdom.

Thank you for reading my blogg.

Please leave me a message.

Jo-ann XXXX