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

 

 

                                                                                                                                                                      

                                                                                                            

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6 Responses
  1. Debbie Hammond says:

    It really breaks my heart to read Samuel’s story, but I also realise that it’s a huge release for you and Michael to be able to relive what happened. It can be extremely healing. Having the support of family, friends and people like me who stumbled across your family on Facebook by sheer mistake.
    Because I work with children and adults with Cerebral Palsy and aquired brain injuries, I was immediately drawn to your plight.
    Being able to share your journey from the beginning gives me huge insight into the care I can offer to my clients and their families. I only meet the person after their accident, and most times I never to get to see “before” pics, and a lot of parents are not ready or prepared to speak of their child’s disability. This is soooo important for me to get to know the client both before and after his or her accident. Every little piece of information about that person is important to the care I can offer.
    I commend you for your ability to share with me and others about your thoughts, hopes, dreams, dreads, fears, anger etc ….. it really helps to bring us into your world in a hope that we can offer you and your family the support you need now and will need for many years.
    God bless the work your foundation does …… You’re special people and I have the uttermost admiration for you both.
    luv Debbie xoxo
    Personal Care Assistant for the Cerebral Palsy League, Qld

    • theboss says:

      Debbie, Thanks for that. It bought tears to my eyes reading your comments as it has made me happy. This is exactly one of the reasons for me to write about my experiences and thoughts. I am telling my story not only for those that have followed behind me on a shared near drowning journey, so they can see they are not alone and that they can reach out for help from me, but it can also be used for teaching Doctors or other Health Professionals about our journey as Parents and of ways of ‘coping’ that arent always perceived as “normal”.
      Some parents cant and wont tell their story, so I am very glad that I can, and I will continue to write. If it helps 1 family cope a little better, 1 Health Professional understand a little better, save 1 child from drowning, then I have done my Son proud and given a bit of meaning to his terrible accident……
      PHEW….not sure if that makes any sense, Im writing through tears….
      Thank you Debbie, Im glad you stumbled upon us by accident and that now I can call you my friend…..XXXX

      Jo-ann xxx

  2. Debbie Hammond says:

    Thank you Jo-ann, Sorry, didn’t mean to make you teary. I take my job extremely seriously, it’s not just a job to me >> more of a calling. I can’t start to explain to you how much richer my life is being able to work with these beautiful people. There are 5 purpose built houses in our complex, each houses 4 clients. My house has 4 young men. Our job is to provide the type of home, food and living that each client would like. They have round the clock care with approximately 6-8 Carers working shifts. Only very high care clients are excepted into the houses. We run the house as a home, do all the cooking, cleaning, washing, personal care and leisure time, even hospital visits if required. We really do have a lot of fun with the boys, it’s a beautiful concept and as permanant Carers to that house we become extremely close to them and their families. I like to think that the parents can go home knowing that their loved ones are with people that really care for them.
    I’m glad you would like to call me your friend, because I already feel like a friend to you and your family.
    Debbie XXOXOXO

  3. theboss says:

    Debbie, Dont you dare be sorry for making me cry with your last comment. I was very happy with you ‘getting’ what I was saying. I want my blogs to be a learning tool for people who work with these sort of kids, to understand the parents, to know their feelings even though they dont express it to you.

    I achieved my goal, I was very happy. I know you take your job of love very seriously, there should be more people in the disability industry like you. Someone to trust and feel comfortable to leave your child with is a daunting prospect to any parent, let alone a parent of a child that cant tell you they are ok.

    Thank you Debbie XXX

    Jo-ann XXX

  4. Anna Rham says:

    My web site is the site the i builted for my grandson Bobby. It’s been 15 years since his accident, and time dose heal some things, but you child will be a different person. Lots of hard work, and going with your gut feels is what has gotten us this far.
    Listen to what the Dr.’s have to say, and then go home check it out on the web, and chose what you think is best. Go with your gut.
    We are from the USA., so things might be alot different from where you all are. But i do know that all our kids are they same. They are all Loved, and we all want the best for them.

    Anna Rham
    USA

  5. Nina says:

    Jo-ann – I found Michael’s blog via Twitter, and then found yours. I am nowhere near finished reading, but I have read a few of your (and Michael’s) posts. I felt the need to quickly drop a line – to say what inspirational, resilient, amazing, brave, awe-inspiring parents you both are!

    I look forward to reading more, and think that you sharing this story is not just courageous, but also a sign of such incredible strength and determination to make a difference.

    Keep up the amazing work, I will definitely be back on this blog soon. All the very best for a happy Christmas/New Year surrounded by those you love.

    Best,
    Nina.

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