“Sometimes when you pick up your child you can feel the map of your own bones beneath your hands, or smell the scent of your skin in the nape of his neck. This is the most extraordinary thing about motherhood – finding a piece of yourself separate and apart that all the same you could not live without.”
― Jodi Picoult, Perfect Match
Spencer has been sick for quite a while now. Seems never ending. Each day a new drama. Sore eyes, crackly throat, runny nose, sneezing, chemosis, headaches and then one day he vomits. Alarm bells ring in my head. And then another vomit. Three months of anti biotics and restlessness. Months of waiting for some type of healing. It’s hard work to maintain his health. Maintain a marriage and care and comfort my other children. It takes a toll and the big black hole dooms nearer. The world spins and my heart breaks. I’m confused and alone, scared and exhausted. Looking for some hope, some help.
There is eternal influence and power in motherhood.”
― Julie B. Beck
I whirl in panic when Spencer vomits for the second time. And call his cranial facial clinical nurse. With explanation of his symptoms we are asked to bring Spencer to Westmead immediately for review and a CT Scan. We leave Wednesday afternoon, with frogs in our throat and a unknown fear rumbling in our belly. My mind races and thumps, my heart bursts. I’m completely drained and just hope it’s not pressure building within his brain.
We are checked in to emergency and wait with frustration in the room, bustling with sick kids and that overpowering smell of illness and pain.
We are given medication to put our little man asleep. He has to have it orally. Remembering the time he had it before I request to do it myself, he spits it out. With that we tip him back and force him to swallow the liquid to which he coughs and chokes it down, the look in his eyes ask me why I was doing it. I kiss his little head as he drifts into a deep sleep. I carry his little body, lifeless, to the CT room and lay him gently on the cold table that will be pushed mechanically into a tunnel like machine. It whirs and spins around his sleepy head. Done. I watch him sleep, wondering what he dreams, wondering what will be the outcome of this procedure. Turning I notice a doctor reviewing his scan. Trying to judge what he is looking at, what is he saying. He comes out from behind a cold glass door, puts his hands together and tells me Spencer’s hydrocephalus has dramatically increased since the last scan like a dream he suggests the only option will be to insert a VP shunt to decrease the pressure in his head. I don’t really take in what he is explaining, I just stared at my little boys precious face leaning against the pit of my shoulder. I knew that it was possible for Spencer to have surgery to fix this. Maybe another skull expansion. Not a shunt. I didn’t know about these, figured it wouldn’t happen to us. I was in shock and my hands where stiff. How would I explain this to Rod? I breathed in the disinfected air and hoped this doctor was wrong. I would wait to hear from a specialist in this stuff before I jumped into the wave again.
I told Rod he would most likely have to have a shunt to drain the fluid. That’s all I knew about the shunt. I didn’t think it would be much more than that. Again, I was wrong. A neurosurgeon came to see us. He said it was very important we consider surgery to insert a shunt into Spencer’s head. We asked how long he had to have it in…. Forever.
I didn’t think I would have to feel so empty again. My heart stopped and my body felt weak and hot. I just couldn’t believe it. Why did this have to be? My poor little man…
We where very lucky to catch it before it lead to blindness and/or brain damage.
We where both in disbelief, the blood drained from our faces as we set ourselves up to face another surgery. I laid my head on Spencer as he slept of the effects of the oral meds he had to keep him asleep while he had the CT Scan. I wept quietly into his little body, asking god why he was doing this all over again. It wasn’t fair. What would happen if the shunt malfunction? We where so far away from a specialist… It’s unreal the feeling of deep sadness, it takes your breath away, your body becomes weak and your heart thuds against your chest. Your mind becomes blank and the room becomes quiet And motionless…it’s a feeling of pure heart ache.
They said Spencer would of been suffering headaches and developmentally would not of grown. Hydrocephalus is common though, even in children who don’t have his syndrome. It was a common surgery to. Done many times. Rod questioned the reliability of these surgeons. Dr Chasling was head of neuro leaned over and whispered in Rods ear that he ad been doing this for 35 years. It was something he had to hear. He also told us he raced down here because he wanted to see how Spencer was doing with the amount of fluid built up, he didnt expect him to be doing so well. I just wanted the pain to go away from Spencer and question instead of when it would/could be done. They would infuse Spencer with high powered anti biotics to clear his sinus infection, no anti biotics doctors had given Spencer over the 3-4 months eould have done any good. The surgery was scheduled for Friday. The wait began. it was different this time. We didn’t have time to deal with it, talk about it or let it sink in, it was happening regardless of how we felt.
Motherhood is a Sisyphean task. You finish sewing one seam shut, and another rips open. I have come to believe that this life I’m wearing will never really fit.”
― Jodi Picoult, House Rules
When we where taken to the ward from Emergency I asked to speak to someone who knew about shunts and could advise us on how it would affect our lives. I had many questions and until I knew the answers I remained in a daze of confusion and anger somewhat. Angry god would insist on pulling us through another drama. A life threatening drama. Had I really deserved this? Had Spencey? What was the reason he did these things? I just couldn’t understand. Would the shunt cause paralysis if it shifted inside the brain? Would we have to move closer to Westmead? Would I require some other support to care for Spencer? Shit…. Our lives again on the edge. It was so bizzare. I had to see the CT scan of his brain and what was going on.
The scan showed Spencers brain before. Mild Hydrocephalus. And now the difference blew me away. A ventricle inside his brain was blocked… His brain had been pushed out of the soft part in his skull. The pressure would of been intense. It was taking up halve the space of his skull, it was surreal to look at how much fluid had built up over the last 15 months. I can not imagine how awful he would of felt, the pressure behind his eyes and ears causing all sorts of infection and sickness, headaches and further deafness. The doctors said his body had been compensating. My little son had been suffering yet coping because he is tough and brave.
We had a nurse specializing in shunts come see us. She explained there purpose and care, which was quiet simple. An engineer in the 50’s had designed the shunt to help his daughter. It had of course been slightly modified. There where a few types she showed us the shunt Spencer would have. It was like long spaghetti noodle. The shunt itself would sit on the skull under the skin and a 10cm tube would be threaded into the depths of his brain. When the pressure built up it would be drained down into his abdomen cavity where it would absorb into his body. Like plumbing really.
During a ventriculoperitoneal (VP) shunt procedure, a small hole is made in the skull, and a tube is passed into the ventricle within the brain. The tube (known as a ventricular catheter) is connected to a valve, which in turn is connected to another tube which is tunneled beneath the skin, and the end is placed within the abdomen. The valve regulates the pressure at which the shunt will divert fluid from the brain to the abdomen.
It was incredible. The shunt though had its problems. The main problem would be a blockage. We just had to keep an eye on his behavior… That’s it.
When she left the room. A mans voice came from behind the curtain.
” I don’t mean to ears wig, but our daughter Keeley has just had a shunt… She was born with half her brain. The shunt has given her opportunity to walk and say a few more words.” I pulled the curtain back to see a beautiful young lady sitting on the bed playing an iPad, singing along to gangnam style. Of course you could see she had some issues but she held her own. A pretty long haired, smiling little lady. Instantly Rod and I breathed again. It was true inspiration. I was relieved and amazed. The shunt would give Spencer quality of life, as it did Keeley. We are grateful of their ears wigging. It allowed us to see success. It had actually been her second shunt in 10 years. I looked at Spencey as he blew Keeley kisses and said ‘Bear bear’ his nickname for Madison. We brought her a teddy the next day. Her parents and Keeley made us grateful for our situation, reminded us we are lucky, prevented us from worrying our hearts out and just breath. We had to do this.
We noticed a change in Spencer’s breathing by Friday. Obviously the anti biotics had worked and we sat in the toy room playing… The time ticked by. He had been fasting from 2am. At one stage we where told the surgery was cancelled as they didn’t have a bed for us in Intensive care. We where a little flustered. Ten minutes after, the nurse manager came in and told us not to let Spencer eat just yet. She was going to a meeting to see if the could do the surgery. Messages had been mixed between the nurses in ICU and the ward. So we waited…
She returned half hour later and told us it was going ahead. Exhale…
Only a few minutes later we where walking behind the porter pushing Spencers bed into the surgeries waiting room. Just like that. He was smiling and waving at everone walking past. It all happened so quick we didn’t get time to think about it. The anethiest came to check Spencer’s breathing. I put on the blue hat and coat and suddenly Spencer was screaming. Where had his mummy gone? He carried on crying down the hallway into the room they put him to sleep. He pointed back at Rod and cried “dad…dad…dad” it was heartbreaking. I placed him on the bed and they pushed the white liquid into the drip. His eyes rolled back and I chose not to look at his face, I didn’t want to remember his fear, or be a part of it. I spoke into his chest. I told him how proud I was, he was mums bravest boy and that I would be waiting for him when he woke up, it was very hard. He was drifting away into the unknown. He was scared and then his body went limp. I kissed his hands and said I loved him. I was commended for my way of dealing with watching your child slip into a deep dark sleep. He expected that of me. He was scared enough he searched for my strength and I gave it to him. I walked back down the shiny hallway, sucked up the emotions and told Rod it went ok. I sat down and wept into his shoulder. I did this when we faced surgery. Again I lifted my head, wiped the tears and closed my eyes, forcing calmness. Its really not a feeling I can truly explain… I can just tell you it hurts.
We went for a walk to get air. Had some dirty oportos and decided to head back to the hospital. On returning I spot his head surgeon outside with a coffee. It was the longest 5 seconds to wait for him to see us. I challenged his eyes to see if he had encounter problems. With relief he smiled. Thank god. The surgery went well. He was very pleased and had left the “smaller” staff to stitch and carry on with his care. That part was over. Now to heal without infection.
It was another half hour before the pager beeped. We bustled to ICU. To me this was the rough part. You just don’t know what the cut would look like, how much hair they shaved and if he was in pain. It all goes pretty numb at this stage, but you just have to get in there and get it over with.
Spencer was screaming, trying to rip the many cords from his body. The moment he saw us, the very second he closed his eyes and went back to sleep. It was a relief. He was dosed up with morphine and laid quietly on the bed. We just kissed him and patted his little head. I was surprised to see a bandage patch on his belly. I asked the nurse what it was for and she said they cut into the muscle to access the abdomen cavity. Oh…
We couldn’t see his wounds, they where covered this time.
In PICU the parents are not really obligated to stay with their children.but we where not leaving him, when he woke and seen us he was ok. I don’t think they would control him if we where not there. We promised to travel this journey with him, and we would stand by that. By 7.30pm, I chose to head back to the hostel to get a bit of sleep. I was doing it hard to stay awake and alert. He deserved my full attention in the morning and the remaining stay. So we decided to do shifts. I fell into the single, cold bed in the hostel, with my shoes still on and drifted into a light sleep. I woke a few hours later and remembered this was real. Walking back down the empty hallways of the hospital I relied on the many framed children’s pictures that filled the walls, they wake you up. Even though Ive seen them many times they break the chilly hospital feel and silently push you on.
Spencey was asleep on his daddy’s lap. I woke him and said I would take over. He hesitantly put our boy back on the bed. It was 11pm. Darkness smacked against the window looking outside. The night lights where on shadowing the children in here. No other parent sat, wide eyed and frightened by their child’s side. The nurses typed on their computers, some silencing alarms and re programming pain relief. I watched the monitors. Yawned. Read a magazine, yawned. Slipped back into the soft ness of the chair and closed my eyes, wishing for a safe healing. Spencer woke a few times during the early hours. I comforted him and he settled again. I’d made time to rush to the parents room and make a warm tea, swallowing fast and returning to my baby. His body looked so big all spread out over his bed. He had grown so much since last years surgery. I think he knew what was going on this time to.
Spencer had 14 stitches in skull and 8 in his abdomen. As the skull doesn’t have muscles it wouldn’t be as painful as the abdomen where they cut through 5 layers of skin and muscle. He required another CT Scan the day after, he was still a little drowsy but I was concerned he would move. I requested a doctor so he could be sedated. Rod though said he would be ok. I wasn’t so sure and wasn’t taking the risk. Rod went into the room with him this time and low and behold placed Spencer on the cold table again and whispered to him that daddy was here. I could here him counting the stickers on the machine. His immencse trust for his dad allowed the CT scan to carryon without sedation. It was an important moment for us all. This time Rod was commended for how he kept Spencer still. The scan showed all was in the right place and there was no unexpected swelling inside the brain cavity. Relief.
We where shifted to a ward. Out of PICU so that was a big step. They dropped his morphine intake to. Another step. I noticed when I was changing him how bloated his belly was, like a big watermelon. He had not eaten very much and called for the nurse. She had no idea and we couldn’t see a doctor until late that night. When that time came she really didn’t know either and her accent was particulay hard to understand. So we prayed it was all good. Early next morning our doctor came in to see us and said it was just a build up of gas and as long as he was doing number 2’s, which trust me he was, there was no need for concern.
In this ward we met another brave young fellow, Tyrone, who had had a stroke when he was three and since then had also had a shunt. His recent surgery was to reshape his skull. His mum had explained how it was a very abnormal shape before the surgery. His incision was like a cross right over the side and from back to front on his skull. He was recovering well. Truly amazes me how young people cope with these huge surgeries. He was also amazed by Spencer and a ninja turtle fan. Kids are resilient and show courage and bravery in many ways, they usually connect with kids dealing with similar circumstances and from the first few hours we had been placed across from them Tyrones mum and I had bonded a special friendship. We know what our kids go through, we feel there pain and fear, we also accept and appreciate each other as mothers. I thank her for her advise and support.
We spent as much time as possible either walking the corridors of the hospital or exploring outside. Spencer had enough of sitting on the bed and pointed towards the door as soon as he woke up. He hated the nurses, well not so much the nurses but when they walked in and had a blue t shirt on he screamed. With age he has worked out that when they enter it’s to poke and prod and he just wasn’t having it. Obs where taken when he was asleep. Which wasn’t often either, although when the doctors walked in he smiled and waved at them. A charmer. We walked the grounds of the hospital and found a huge bird cage Spencer was in awe at all the birds and babbled and talked to them, pointing and grinning. He was happy, so where we. This experience, nearly over.
I don’t think there is ever really a place where we can find peace when you have children with special needs and problems. As much as people tell you that things will be ok, you don’t quiet move on from the first initial shock of finding out your child is not like other children. As much as you try I just don’t think you can. But that’s my feelings, I hold them close so as Spencer will never feel at fault, or responsible for my grief and confusion. He deserves better. I’ve learnt so much and know that it’s not over, but it’s a good leap into the future and a good thing we went with our instincts that, now, gives him a new quality of life.