Another surgery : March 2010

I know my last post said that I will talk about the transition out of PICU and into a general ward but having a child severely affected as the result  a near drowning we quickly found out we cant plan anything.

The only thing that I can say for sure with my blogs is that my plans of what I want to write next can change in a heart beat. So I will write about the past 4 years intermingled with the present until Ive caught up to tomorrow.

First thing in the morning, Samuel is having some surgery, in the grand scheme of things this surgery is very minor. So minor in fact it should only take 10 minutes. Samuel will be getting an “entry star” gastrostomy  button which is a button that is a bit more permanent in his stomach. After this initial insertion the entry star needs to be inserted by a Doctor. It is secured inside the stomach by a star looking anchor which spreads out by a gadget once inside the tummy. This is so Samuel can be fed straight into his stomach as he cant eat orally any more. I never wanted to get the entry star as I cant replace it myself if it does come out and also it looks quite gory and painful…..but its not painful, just ugly.

The one he has at the moment is called a “mic-key peg’ which was the type we have persevered with since August 2006. The reason we have decided to change buttons is because these buttons cost about $250:00 each, the Australian Government gives you 3 per year. Well my Son who doesnt like to stick to policies and rules didnt like the idea of only getting 3 a year and so decided he wanted to change them every 2 weeks rather than every 6 months with 1 spare. This means I have to give up some of my independence and go for the star….Only fitting really as we call Samuel our STAR….He must be telling us something. XX.

The reason Samuel needs his buttons replaced all the time is because his tummy muscles spasms (is dystonic) and crushes the balloon (which is the anchor internally that is filled with water). It causes the balloon to leak out all the water by a tiny little hole which then allows the button to just fall out of his tummy. If we dont put the button back inside Samuel within the hour the tummy seals itself quickly then Samuel would have another 5 hour operation to replace the old hole (stoma) within his stomach. Otherwise the only way we would be able to feed Samuel is through a nasal gastric tube. (Which is what Samuel has in his nose at the top of the page near the rainbow.)

The other procedure Samuel is having tomorrow while under a general is having his bottom baby teeth removed. They are so loose and so its very dangerous for Samuel. His new teeth are coming through all crooked because of the baby teeth. If one of the baby teeth get swallowed and then aspirated (breathed into) into his lungs that can cause him to need major surgery or even death. Samuel has swallowed teeth before but thankfully they went into his stomach. We had to get x-rays to make sure…..Did you know that swallowed teeth can travel down the bowel for up to about 4 months… Samuel had x-rays up to 3 months later and we could still see the tiny little tooth. I never found it in the nappy. ( I wasnt going to look if I didnt have to)

Even though Samuel has had huge major surgeries, I am just as nervous with this minor surgery. It is still an anaesthetic with its own risks. Ive got to prepare Samuel throughout the night as he has a feed running all night. Samuels feed has to be turned off at 2AM then he can have water and medication until 6AM. He must be at the hospital by 715AM as he is first on the list.

My issues within myself are that Im apprehensive about the surgery as he has had much more major surgeries than this and with some had a turbulent time but managed fine. He has had minor surgeries and we have nearly lost him. We can never keep up with or predict how Samuel will be with any procedure Samuel has had or going to have in the future.  Today my diet was hard to stick to because of the stress, its OK I will be alright tomorrow.

Samuels strong, Im strong!

Jo-ann XXX

A Mothers Heart break: Water Safety

On the 9th of April 2006 I faced something no mother should ever have to see.

I woke that day not realizing that it will end up being the worst day of my life. My eldest Daughter Tanja (10) was at her Nans for the weekend. It was a beautifully warm, sunny autumn day of about 28 degrees so I took up  the opportunity to use the sun (and a quite warm breeze for that time of the year), so I washed clothes, sheets and towels. I was also cleaning the inside of the house and my two younger children wanted to play outside. Periodically I was outside with the washing then inside cleaning.  Every day, including that day I checked the pool gates to make sure they were closed (there were 2 gates). I had all the windows and doors open so I could watch and listen to my children play. They were having a great time giggling and having little conversations with their dog Porsche as if she were another child. Taylor (5) spoke constantly so it wasnt unusual for me not to hear Samuel (2) talk all the time especially if he was brumm brumming his little cars. I didnt always know what they were saying, I was just happy I could hear them talking and giggling. Samuel had taken off his shorts because it was something he liked to do, at anytime he would take off his nappy and on the odd occasion he would take off his t-shirt, he thought it was funny to do it. They were safe in my backyard away from the pool area. I relied on my four year old pool fence, I thought it was safe. I was terribly wrong.

My daughter called me to the back door in a jovial melodic five year old way, “mummee I’ve got something to showwww  youuuuw”. Thinking she had covered Samuel in some mud again I said “Ok in a minute” as I thought I just have to put some towels and sheets away as I had just folded them and I didnt want them to get muddied. Taylor then said , still melodically without panic or alarm “Muuummm I reeeeaaalllyy neeed youuw  toooo sseeeee thissss” so I went to the back door. Taylor was on the climbing cubby/gym and she was grinning naughtily, I thought what have they been up to. I asked her “where is Samuel”,  as I walked out the back door, she said “in there” gesturing to the pool area with a sweep of her hand. I quickly scanned the pool and the pool yard, no Samuel, the gates were shut, the water was flat, not even a ripple to suggest he was in there. There was no sign of Samuel, so I went around the back of the house to see if he was there, he wasn’t so I repeated “where is he?” , my daughter said “I told you he went in there for a swim”. With the sun’s reflection on the water I could not see anything in there, let alone Samuel, so I opened the pool gate, raced into the pool yard and it was then that I saw my son’s tiny little body floating lifeless just centremetres under the surface of the water right at the edge of the pool. He was wearing a t-shirt and his nappy, the nappy was three times bigger than it usually was with all the water in it.

He was in the deep end, face down, hovering just centimetres under the water right at the edge of the deep end. I didn’t even get wet until after I scooped Samuel into my arms. I rolled him onto his back in my arms, he was heavy, lifeless, swollen, his eyes were bulging and starey, he was foaming at the mouth, blue around his lips and his nose and his skin was a strange pale yellow colour. He did not look like my son. I will never no matter how hard I try, get the picture out of my head how my son was. The look , the taste, the smells,the sounds or the feeling will be with me forever. I ran back through the self latching gate. I laid Samuel down at the back door, I had felt a heart beat on my hand while carrying Samuel. I ran to the back door and went inside to find a phone, three phones and I couldnt find one anywhere. I ran to the front door where my new neighbour accross the road was sitting on his new bench seat on his front Verandah. I yelled to him to call the Police (that was all I could get out instead of Ambulance). He ran inside his house to call, I had already run back into the house to retrieve Samuel from out the back. All that took 5 seconds but it felt like slow motion. It felt like something strange took over my body. Samuel lay lifeless at the back door, I picked him up, held him very tightly and ran through the house to the front yard, by this time there was no heartbeat.

I knew I had to act quickly and without panic if my son had any chance of survival, I would feel panic coming and I would have to consciously push it away to deal with it later. I started CPR on my precious little boy out the front of my house on the lawn. It wasnt until three hours later that I found large prickles in my knees where I had been kneeling to do CPR on my baby. While performing CPR I kept thinking that I wasn’t doing it right. Pushing down on my son’s chest just looked and felt so painful for him. Was I breathing in too hard for a two year old, was I damaging his lungs, how many breaths to how many pumps. I know the rules of CPR had changed was I doing the old way, the wrong way or was I doing the new way, the right way. Who cares I just had to do it, right or wrong had to be better than nothing at all, he was dead if I did nothing. I kept wondering if I was hurting him rather than helping him, I just had to keep going no matter what or I knew my son wouldn’t make it. I had learnt CPR but it had been a few years too long ago. I knew that any CPR was better than no CPR and I also knew that doing CPR was pumping blood through Samuels body and oxygen was traveling through his body also even though his body wasnt doing it himself.

While performing CPR on Samuel, Taylor started crying and becoming quite scared. She was yelling at me and holding onto the pillar on the verandah like it was the only thing holding her up. Tears were streaming down her face. She kept yelling to me “whats wrong with Samuel, what are you doing”. I was getting very cranky with her because I was trying to concentrate on Samuel with how many pumps and how many breaths I was doing. I yelled back at her sort of to shut her up and also to half tell her off and I said the most regretful things to her….” youve killed your brother, you opened the gate and killed him”….Then I went back to performing CPR, knowing I had just said the worst thing anyone could to a five year old, or really anyone for that matter. I couldnt even say sorry to her or hug her as Samuel right then and there was the most important person to save. I could say sorry to her later.

As soon as my neighbour came over the road with his wife I could hear that she was talking to triple 0 and then she said we need an Ambulance not the Police,  so that was when I started to panic and then break down. I asked my neighbour to then take over and so the triple 0 phone operator told her to tell her husband what to do. A lady who was a nurse drove by and stopped as she could see that CPR was being performed and she then took over until the fire brigade and the ambulance came and then they took over.  Samuel still hadnt taken a breath nor did he have a pulse. His lifeless body was picked up and ran with to the back of the ambulance and CPR was being performed while he was being strapped in and with sirens blaring he was taken to the Nepean Hospital.

During the time my neighbour had taken over the CPR I ran back into the house to ring Michael to tell him about his Son. Michael was in an area north of the state of NSW  non-contactable by phone and had been there for two weeks and had one more week left before he was going to be home. He was working for the NSW Fire Brigade and the only way I was going to get the message to him was to call triple 0 and speak to the Fire Brigade control room. I had to relay the situation to someone I hadnt met to tell my Husband about his Son. That is when the Fire Brigade dispatched a Fire engine to our house, the Fire Brigade got to our house before the Ambulance.

I wasnt allowed to take Taylor into the ambulance so Taylor had to stay with the neighbours. I didnt get to say sorry to her, I only got to give her a hug, I didnt think to say sorry, it all started to become a blur with the Ambulance officers cutting off  Samuels T shirt in the back of the Ambulance and gave him his first shock, even before they got to close the doors.

On the trip to Nepean hospital and then at the hospital, he was given 13 shocks to the heart and several adrenalin injections. Samuels breathing started before his heart got a rhythm. Thankfully where Samuel was given an adrenalin injection in the right shinbone the leg started to swell and the leg from the toes to the knee started dieing and going black and I mean black, I had never seen anything like it. Thankfully I had that to concentrate on instead of the bigger picture. I kept being told that Samuel wasn’t going to make it but I kept denying it, I kept thinking, they were just doctors what do they know, he’s my son. There were tubes put into Samuel all over his body right before my eyes, everything was so quick so controlled and so quiet. There were about fifteen Doctors and Nurses every where all around my son, they all had their own job to do and they were all very determined and efficient. I was right next to his bed at the top corner, I could reach out and touch it but I felt like I was at the other end of the building. This did not seem like it was happening, I just wanted to wake up from this vivid nightmare.

Samuel was put into an induced coma as they needed to stabilize him for NETS to transfer Samuel to another hospital, it took about three hours for Samuel to be stable enough to get transferred, and in all that time I kept being told he probably wasn’t going to make it. What did they know , how dare they say that, I kept thinking. During the wait a Hospital Social Worker was assigned to be with me, she followed me to the toilet and asked if I need a Panadol, I replied snappingly “What the f%#@&k will a f%#@&king Panadol do, its not going to fix my Son”. I felt so angry towards her and it just felt like such a stupid question to ask when my son was teetering on the edge.

We were finally transferred to the Childrens Hospital at Westmead where Samuel was re-assessed and I was still told that my son was in grave danger and that he probably wouldn’t make it through the night. At this point they put Samuel onto a cooling mattress to cool down his body and give his brain the best chance of recovery and survival. I had to hear and experience all this without my husband, thankfully a close friend was called to be by my side.

Michael was away with work at the time but was on the first flight home after receiving the devastating news about his only son. Another two hours later Samuel’s father walked into his room in intensive care, the look on his face was pure shock, disbelief and hurt, I hope I never see that look ever again. I was so scared as i didnt know how he would respond towards me even though it was an accident. As there were so many hours in between the accident and Michael seeing Samuel so many scenarios flooded into my head. It was a traumatic time for all of us.

The next morning the Intensivist (Head Doctor of Intensive Care) and the Social Worker (a different and brilliant Social Worker) took us into a little room on our own, we had seen plenty of hospital shows to know that this isn’t a good sign. We were told that Samuel’s prognosis wasn’t good and if he didn’t have any brain waves he would be brain dead and so would not live when the machines were turned off. As at that moment he was on artificial life support and soon he would have to come off it. We were asked what our wishes were if Samuel was brain dead and both Michael and I knew that the best thing that we could do would be to donate Samuels organs so another family could have their child survive and we would have Samuel live on and grow in another child, and that in itself was a strange comfort to us.

It wasn’t till the day after that Samuel had an EEG to determine if he had any brain waves, and to our relief he did. Michael and I could dwell on the what ifs or why us or be angry but it’s done it HAS happened and nothing can change it. Samuel spent 3 days on life support, when it was turned off, Samuel wasn’t expected to live but he did and he kept fighting. He spent another six days in intensive care with twenty four hour round the clock, 1 on 1 nursing and the Intensive Care Doctors were only a short five steps from Samuels bed. So we felt safe that Samuel was being looked after and nothing was going to happen or go wrong.

During our Nine day stay in the Pediatric Intensive Care Ward Samuel had terrible, actually they were absolutely horrific spasms that would make Samuel arch his back so badly that just the back of his head and the back of his heels were the only body parts touching the bed.During those spasms Samuel made really awful sounds that I never want to hear again. Samuel was fed through a nasal gastric tube and was given high doses of many drugs. He was given hand splints and his legs plastered to save range as the spasms shorten his tendons, ligaments and muscles. We werent sure if  Samuel could hear or see anymore as he just seemed to look through you in a glazed over stare and didnt react much to sound. But we acted like he could see and hear and also know what was going on so we were careful what we said in front of him. Samuel didnt know when it was day or night so at night we played soothing classical music, then as soon as it was morning we turned the music off. This seemed to work well.

We met in those first nine days many staff at the Childrens Hospital Westmead. There were Intensivists, Rehab Doctors, Neurologists, Orthopaedic Surgeons, Pediatricians, Registrars, Interns, Consultants, Professors, Nurses, Clinical Nurses, Clinical Nurse Practitioners, Occupational Therapists, Physiotherapists, Cleaners and many many more. Little did we know how many more people we would meet, and how much we needed them all.

A few weeks later my stepfather made the discovery of a broken panel on the pool fence when he came over to mow the lawn. Samuel had pushed it over to get access to the pool which is what our five year old daughter had been trying to tell us at Samuel’s bedside. We didn’t know this until then because if we came home from the hospital at all we didn’t go outside, we didn’t even open the blinds to our backyard because we didn’t want to look at the pool.

Until then we had the horrible thought that our five year old daughter may have opened the gate and let Samuel in. I blamed Taylor for opening the gates and letting her brother into the pool. I feel sick that I didnt believe her when I asked if she had opened the gate when she said no. That awful day she wasnt worried about Samuel being in the pool, as she was a “middle” child, she was excited that Samuel was going to get into trouble when I saw him in the pool. She felt no fear for Samuels safety being in the pool as the whole family lived in that pool. Samuel loved the pool and had no fear of the water, he loved playing in it. He always had at least arm floats on and was constantly supervised while in the pool.

My son is a brave little man, he is the toughest, strongest person I will ever know in my lifetime.

Samuel spent nine days in intensive care. The next time I blog I will talk about the transition from Pediatric Intensive Care to a general Ward. this will include the fears of changing from intense care to minimal care, the treatments to help Samuel, our thoughts and feelings of our Son.

Kids are inquisitive and love water and so they should have fun with it, but parents or an adult/carer needs to supervise so that everyone is safe. If the unthinkable does happen the quicker CPR starts the greater the chances of survival. I want people to know that if a child survives a drowning it doesn’t mean that they will be normal, nearly one quarter (22.5%) of all near drowning survivors are left with a brain injury that leaves them with disabilities for life. Anecdotally we also know that some of those that survive with apparently no ill effects at the time of the near drowning may develop other problems as they grow such as behavioural and learning difficulties, but these may not be fully evident until the child starts school, so some longitudinal study following survivors of near drowning is required, as we believe the outcomes may be worse than thought in the long term.

Thank you for Reading my Blog

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Jo-ann XXX