Thursday 30th June- Happy Anniversary

We've been here at the hospital exactly 4 weeks today. On the day that I drove him here I never expected that we'd still be here a month later. I thought we'd hang around the ED for hours and then get sent home with some anti-biotics or something. When the doctor in the ED told me that he'd be in "at least overnight" I thought they'd made a mistake. I think back to that day and still struggle to put it in words- I've sat here for ages writing a few sentences and then deleting them again because no words can sum it up. Sometimes George Clooney pops up in my memory because it felt so much like I was watching an episode of ER.
It's all been good news here this week. Max is responding to the new treatment and he hasn't had a blood transfusion since Saturday! He isn't attached to an IV pole anymore so I can finally take him for little walks around the hospital. The other day my sister bought in a stroller, we rigged up his IV and took him downstairs to the park. It was so amazing to take him outside. I'm not sure he appreciated the moment but I sure did. Yesterday his blood pressure was NORMAL after weeks of being obscenely high. It's like he's decided that he's had enough and wants to go home.
I love that Max gives hope to other people. There's another mummy here who can't believe how sick he was when I showed her a photo of him in ICU. Now he's babbling, laughing, grinning and playing like a 'normal baby'. All things that I was so scared I wouldn't see again. Fingers crossed that the news stays positive.

Monday 27th June- Normal!!

Today for the first time since we got here, Max's platelets were in the NORMAL range at 187!!! He has gone 2 days without having a platelet transfusion. This is the first time in nearly a month that I've been able to entertain the idea of going home. I'm excited but scared by the prospect of leaving hospital. I suppose it'll be a bit like taking him home after he was first born. I know my baby is getting healthier because the days here are getting longer and longer. Initially we had a busy schedule of doctors and various tests. Now I'm happily bored! I can't wait to do the normal things that I'd always taken for granted like going grocery shopping and walking the dogs. One of the first things I need to do once he gets his IV line out is give him a bath! My stinky bubba hasn't had one since we've been here. I want to take him to the pool, the beach, the zoo, the farm and the aquarium. Max was already my world before he got sick but now I want to give him even more. He is my hero.

A word about platelets

This is what happens when a baby on steroids needs to fast

I've spent the last few days deliberating about what to write to bring this story up to real time. We've been at the hospital for nearly 4 weeks now. Since Max got out of ICU he has made me so proud every single day. He is focusing with his eyes again, his neck is getting stronger, he's moving all four limbs and he is looking straight ahead a lot more then he was (he still really struggles looking right though). Max had his first bottle the day after arriving on the ward. At first he didn't remember how to drink and he cried in frustration. The second bottle he wolfed down in record time. By and large the most annoying problem his had over the last few weeks is his platelets. Max's blood has perplexed all the haematologists as he has not responded to all the usual treatments for ITP. The normal range for platelets is 150-400. When Max arrived here, he had 6 and they haven't improved. He's had platelet transfusions a couple of times a day and the odd blood transfusion here n there. Funny how before this all happened I was nervous about giving him panadol but now he has transfusions for breakfast, lunch and dinner. The usual treatment for ITP is steroids 1-2mg per kilo per day. For awhile, Max was on 30mg per kilo! It worked a bit but made his blood pressure high and his appetite HUGE. One day he was going for an MRI and he cracked it in the waiting room because he was due to eat- the whole scan had to be postponed until after he had his bottle. Every time his platelets drop below 10 he is at risk of further bleeding and that isn't something I could go through again. Nearly one week ago we started treatment that has been used in ITp but only a handful of times in babies his age. It's scary stuff and I worry that he'll grow a tail. Today his platelets were 125 and it's the first time in nearly 4 weeks that he hasn't had a transfusion. I don't want to be negative but I'm scared of getting my hopes up.

So how are you coping?

"so how are you coping mum.....?"
"I'm not your mum, I'm his mum, I'm fine and if one more person asks me that question I'll scream." I never actually answered that way but lordy I've been tempted. I know that people mean well and they're trying to be supportive but enough already!! I suppose that in reality, there was no 'right' thing to say and it didn't take a lot to cheese me off at the time. I just wanted people to talk to me like they normally would. Normality was what I craved, not sympathy. One of the most frustrating things was always feeling like I was on show. I often heard the doctors whispering "how is mum coping?" to Maxs nurse and if I ever displayed emotion you could guarantee that a social worker would be sent in later that day. At home you can get a bit snappy and nobody cares. In hospital somebody always noticed.

Starting Physio

Because he could only look in one direction (left) we'd been instructed to put all of his toys on the right and make the left side really boring. Max had already amassed a heap of new toys since we'd arrived, so I moved all of them to the right side of his cot. It looked a little silly and lopsided, I half expected it to tip over. I'd decided to do some form of physio with him everytime he woke up. This might sound a bit harsh but baby physio is really nothing more then the normal things you'd do with a baby but just a little more structured. I didn't enjoy it initially, every physio session was a reminder of what he couldn't do anymore. He was able to move his arms and legs but he was weak on the right hand side. The most frustrating thing was those damn eyes, looking to the damn left all the damn time. I'd talk, sing, make funny noises and jiggle toys in his face, generally with no response. It was those rare times when he did glance straight ahead that motivated me to keep going. By the end of our first week on the ward we still had no answers as far as platelets were concerned but my little man was moving all of his limbs and looking me straight in the eye! I can't tell you how happy I was when he started babbling again and I swear his first 'word' was noooooo! Thes best part though came when he looked into my eyes, held my gaze and gave me a beautiful gummy smile.

Our first night in the Neuro ward

Even though Max was being fed by a tube that went straight into his tummy I wanted to be there with him overnight in case he woke up. I couldn't stand the thought of someone not being there to comfort him straight away if he cried. The nurse we had that night was fantastic and religiously gave him his pain medication regularly instead of waiting for him to be in pain. He slept so peacefully and only woke up a few times. I stroked his head and he'd quickly resettle. I however, didn't sleep so peacefully! The little boy with the fancy brain monitor cried for 5 hours straight. When he finally fell asleep, another baby cried. I nicknamed the other boy 'baby huff n puff' for his distinctly annoying huffy cry. Little huff n puffs mummy slept for (what seemed like) hours before she'd wake up and feed him. It wasn't long after he settled that the brain monitor boy started again. To say it was torture would be an understatement! At this stage, Max didn't have his usual cry back, his new cry was strange and foriegn to me. I never knew if it was him crying or one of the other kids so I slept lightly and woke up to every sound. By 4am, my little space cadet baby was wide awake. Although he was quiet, I didn't like him laying there and staring off to the left like a vegetable. So, it was at 4am on that Friday morning that I took a deep breath, summoned all my strength and started doing his physio exercises.

Thursday 9th of June- Moving to the ward

The day we moved out of ICU I was grumpy. Grumpy at the nurses, grumpy at the doctors and grumpy at the world. It should've been exciting moving up to the wards but it wasn't. It was terrifying! In ICU Max had a nurse all to himself, there were lots of monitors and machines that went 'beep'. All of this was very reassuring and I always felt secure knowing that if something wasn't right then it would be noticed and rectified straight away. Max was still requiring platelet transfusions multiple times a day and we were now having genetic testing to rule out rare genetic disorders. Max was at risk of further bleeding everytime his platelets dropped below 10 and this happened several times a day. Max was also really grumpy and every time he cried the nurses tried to involve me and would ask "what do u think is wrong with him Mum?". I almost cried every time they asked because I just didn't know. A week ago I would've had some idea but now? It wasnt a simple matter of hungry/tired/dirty nappy anymore. He was withdrawing from a cocktail of narcotics and he had a serious brain injury. Where a cuddle from Mum would've always cheered him up in the past, it didn't now. Later that afternoon we moved up to the high dependency unit in the Neuro Ward. We had a 4 bed room and when we first arrived we were opposite a 4 year old boy who was hooked up to a fancy brain monitor. He was profoundly disabled and had a seizure not long after we arrived. I tried not to stare at him but all I could imagine was that being Max in a few years time. all that Max could do was stare vacantly to the left. I'd stand on his left side and pretend that he was staring at me even though I knew he wasn't. On that particular day I felt so broken.

Wednesday 8th of June- withdrawing the ventilator

The next few days after Max woke up were rough. It was now apparent that he was quite a different little boy but how much of this was simply due to medication would be unclear for several days. He was grumpy and not surprisingly he had one hell of a headache. Listening to him try and cry was heartbreaking. His face would screw up and his mouth would open but nothing would come out (tho I am now pleased to report that he has his 'voice' back). He didnt look at me like I was his mummy anymore and this was hard. His facial droop got better almost overnight and this gave me hope.
Finally on Wednesday it was decided to wean Max off his ventilator and later that afternoon it was removed completely. Seeing him for the first time without it was a shock, his face looked naked! I was also scared with it gone because it was reassuring knowing that a machine would be there to breathe for him if he couldn't do it himself. About an hour after the ventilator was removed I was finally able to hold my little boy again. As they placed him in my arms (slightly complicated by all his tubes) it felt better then the first time I ever held him. He cried and cried- the nurse reckons that babies always do this when they get back in their mothers arms. She's believes that the bub is telling mum all about the horrible things they've had to endure in ICU. I could handle that theory so let him cry his eyes out until he fell asleep in my arms.

Sunday 5th June- Withdrawing the anaestheic

At 7pm Sunday evening, my parents flew in from overseas. I am so grateful to my sister and brother in law for organizing their flights and i was stoked to see them. I still feel bad that they missed out on their 40th wedding anniversary cruise and I hope they can rebook it once things settle down.
That same day, they started reducing Max's anesthetic so that he would wake up the next day. He was also on a cooling/warming mat that was keeping his body at a chilly 33degrees- this is neural protective apparently. The nurses were gradually warming him up so that he'd be back to 37 degrees within 24 hours. This was a really slow process, only half a degree every 4 hours because people get pissed off if they are warmed too quickly. His platelets were still low and weren't responding to treatment. At this stage however, we weren't too fussed. It was his brain that mattered.
When Monday came around we sat with Max patiently waiting for him to wake up. We could see his eyes fluttering underneath his eyelids and every so often a limb would twitch. Thankfully, this time the twitches were innocent and not seizures. I was scared of Max waking up. Every doctor kept saying "we'll know more [about brain damage] when he wakes up" so it was easier when he was in the coma to pretend that everything was ok. It turned out that coming out of a coma was nothing like on TV. His eyes opened a millimeter or so every few hours and even when they were fully open late Tuesday evening he was so sedated that he wasn't really with it for several more days. This was one of the hardest moments of his time in ICU because it was now that it was apparent that he had a facial droop.

Saturday 4th of June- Meeting the neurologist

That day Rob and I met with a Neurologist to discuss the results of Max's MRI the previous day. It was a somber room full of doctors from varying specialties all looking either at their hands or at Rob and I with that annoying sympathetic look. Dr Jeremy started nervously, I could tell that he was choosing his words very carefully. He drew a diagram of a brain and showed us the areas where damage had occured. I'm not sure if this was the first time I heard the words 'extensive brain damage' but it wouldn't be the last. All I wanted to know was exactly what Max could and could not do. Of course it wasn't that easy and Dr Jeremy used unbiguous statements like "there's no reason why he can't" and "infants with his level of damage have gone on to...". He explained to us that infants brains are very good at rewiring themselves when damage has occurred. In a sense we were lucky that this had happened when he was still a baby because the right side of his brain would (hopefully) learn to take over the functions of the left. There were things that he'd probably never have like fine motor skills in his right hand and peripheral vision from his right eye. This much I could live with. I wanted to know whether he'd have some form of mental retardation. Dr Jeremy couldn't answer that and again used a good ol' non committal response. By and large it was a waiting game. We wouldn't know much about his brain damage until he woke up and it would take years to see the full picture. I wanted to scream but I couldn't. I just smiled and nodded as the somber mob of doctors filed out of the room.

Impaired reflexes

Max was in a coma for the whole weekend. It sounds crazy but that weekend I felt mostly quite calm. He just looked like he was asleep and it was a relief to see him free from seizures or pain. When he was in the coma I often imagined what he would be like when he woke up. I imagined that it was just like on TV where the persons eyes open and they immediately start talking. Except in Max's case, he was only a baby so he wouldn't talk, he would look at me, smile and then try to jam his hands in his mouth. My parents had left for a cruise the day before Max got sick so at this stage, they still knew nothing. My two sisters Kylie and Tara were there and they were fabulous!
I'm not sure when it happened but at some stage over the weekend a neurologist (I think) came around to test his reflexes. This was the first time that I noticed how impaired they were on his right side. At this stage the doctors were still deciding whether he had suffered a brain bleed or a stroke (to be honest, I still don't really know the difference). I preferred the word 'bleed' because I didn't associate that with my baby being paralysed down one side. But seeing his reflexes so weak really hit me and I think I may have cried a bit. The whole time that Max has been sick I haven't cried longer then a few minutes. I feel guilty crying. My little boy is still alive and still fighting, if I cry then I feel like I'm giving up on him.

ICU- Seizures

The nurse in charge of ICU arranged a room for us to stay in at the hospital. We were allowed to sit with Max whenever we liked but we weren't allowed to sleep next to his bed. That night I wanted to stay with Max all night but the nurses kept reminding me that there was nothing I could do since he was heavily medicated and wouldn't wake up anyway. They kept telling that I'd need some sleep if I was going to cope with the onslaught of doctors the next day. I knew they were right but leaving Max and going upstairs to sleep was a horrible, empty feeling. I felt so guilty. Suprisingly I fell asleep as soon as my head hit the pillow. I didn't sleep well, but I slept enough.
When Max was in the ED the doctors noticed that he had a twitch. The next day, he was twitching non stop on his right side. No one knew if he was having seizures or if it was just an innocent twitch. The doctors commenced him on anti-seizure medications just in case. Later that afternoon as the twitching got worse he had an EEG. I giggled at him, looking like a spaghetti head as he peacefully slept in his morphine tainted daze. After the EEG, he went for an MRI scan. The nurses were hopeful that he could be removed from his ventilator when he got back. As Max was about to leave for the MRI he had a full seizure. There was no doubt anymore, it was real and it was horrible. When Max returned from his MRI the news wasn't good. The EEG had revealed that he was having seizures virtually non stop and this was putting added pressure on his brain. The anti seizure medication wasn't working so that night my baby boy was put in a medically induced coma.I read Max a story as the nurse injected the anaesthetic and I sang 'incy wincy spider' as his eyes closed. Later that night I went to the pub and I drank.

ICU- ITP diagnoses

Max was in ICU for one week and during that time it never felt real. I didn't feel like I was a part of this story, I felt like an observer. I felt like I was watching it on TV. It's nearly 3 weeks later and I still don't really believe that my boy had a stroke. I think this detachment is what has helped me to stay strong. If I stopped for a minute and allowe myself to soak up the magnitude of what has happened then I'd probably go completely bonkers.....

The first 24hours that Max was in ICU, it was such a blur of neurosurgeons, neurologists, haematologists, paediatricians, oncologists and intensive care doctors. I tried to smile and nod politely and look like I knew what they were talking about. In reality, I only heard a few words. All of these specialists would look at me sympathetically and pat me on the back. I never found that comforting, it was just annoying. The sympathetic gestures only reinforced that something was wrong. There was nothing wrong. It wasn't my son who was so sick, it was just some character on the TV. That afternoon they tested Max's bone marrow to see if he had leukemia. We were relieved when we found out that it wasn't. They decided to start treating Max for ITP (Idiopathic Thrombocytopenic Perpura)- a disease where the bodies immune system attacks the platelets putting the person at risk of bruising and (as in Max's case) bleeding on the brain. ITP was rare in babies and bleeding on the brain was rare in ITP. We were unlucky in both regards.

2nd of June- CT scan and ICU

I called Rob who I'd only just dropped off at work. When he got to the hospital he was shocked to see Max had deteriorated in such a short space of time. "OMG, is that our kid?", I remember him saying. Max's blood results came back and his red/white cells and platelets were very low. They took him for a CT scan of his brain on the way to ICU. They told us that it would take an hour or so to get him set up in ICU and we wouldn't be able to stay with him at that time. We told the doctor that we were quickly popping downstairs to grab a coffee and he shook his head and said "no, I'd like you to stay. We need to talk". My heart sank when he said that. I knew something was majorly wrong and I knew they'd picked up something during that CT scan. Funnily enough I was well and truly numbed by this point and somehow managed to stay sane during the hour and a half it took the doctors to come back and tell us the news. Max had suffered a major stroke in the left side of his brain.

2nd June, 2011- Arriving in ED

I thought Max's breathing was a bit shallow so I drove all the way to the hospital with the radio off so I could hear every breath. I contemplated calling an ambulance but figured since I was on my way it was probably easier to just keep driving. I still thought I was being paranoid- maybe it was that denial that kept me sane and focused enough to drive. We arrived at the hospital at 930am. The carpark was full and there were cars everywhere! I parked illegally and got him out of his car seat. He didnt wake up when I picked him up and he was floppy. I put him over my shoulders and ran! When I got to the triage desk I almost threw him at the nurse and tried to briefly explain what was wrong. A similar thing happened to my niece when she was a baby- she spent a week or so in hospital on IV antibiotics but was ok! The nurse whisked him away and called the 'resus team'. Within minutes Max was on a bench surrounded by doctors and nurses. Shortly after, he was hooked up to machines with wires and tubes. They knew instantly what the red spots were but couldn't access a vein quickly enough to check his blood. They had to drill a hole in his shin to get blood from his bone. I will never forget that moment when the drill started and my baby screamed. In a small sense, it was nice to hear him protest but my baby was in pain and that broke my heart. Not long after this the doctor said they were planning to intubate him and transfer him to intensive care.

2nd of June, 2011- The early morning

I'm trying to remember the events of this day as accurately as i can but it's nearly 3 weeks later and a bit of a blur....
This morning Max woke at 6am (normal) but fell asleep halfway thru his bottle (not that abnormal). He slept on and off until half 8 and was grisly in between. I figured by this stage that he wasn't quite right so I quickly showered and dressed and planned to take him to a doctor after we'd dropped his daddy off at work. At this stage I still didn't think that anything was majorly wrong with him, just a case of baby flu perhaps that perhaps needed some antibiotics. He had no temperature and a part from being a bit more grisly, he was his normal self. I decided to give him a bath to help him relax and it was then I noticed that the red spots were worse and he was paler then usual. I tried to ring his maternal child health nurse 14 times and they weren't there. I tried to ring the national maternal child health line and got put on hold. During this time Max's daddy (Rob) prepared his bottle and got him ready for his feed. When Max fell asleep despite being due for a feed I knew something was wrong. In hindsight I should have realized sooner but the symptoms were so mild and so damn subtle. He was only 'a little bit off' and how often do babies have days like that?? I decided at that point to take him into the Childrens hospital. At that stage I thought I was being a bit paranoid but by the time we got there he was struggling to breathe.

Max's first 10 weeks at home

Max loved to eat. He lived for his bottles and always let the whole world know when he was hungry. He didn't sleep well during the day, only 20 minutes at a time. This was a bit frustrating but he quickly settled into a good nighttime routine so I couldn't complain! Frustratingly, he slept beautifully when my mother looked after him and made me feel a bit inept! He loved his cuddles and was a total mummys boy! I don't know how many hours we spent cuddling on the couch watching crappy daytime TV! I never put him down for long so we were very close. He was my best bud and my entire world. During this time, I spent a lot of time playing on my phone. Sometimes it was Facebook and other times I googled everything about babies that I could think of. I wanted to be the best mummy I could, so I looked up EVERYTHING! Max reached most of his developmental milestones early and gained weight perfectly. He was the healthiest and happiest little boy.....He was my little fatty ;-)

Maxwell Hendrix Valentine is born

Maxwell Hendrix Valentine came into the world on the 22nd of March, 2011 at 734pm. He weighed 8pd10oz which was far less then the doctors had predicted. I had never been interested in having babies and can't say that I was excited when I initially discovered I was pregnant. The day I found out I was expecting, there was a homicide right across the road from our house. Not sure if this was a sign of things to come. I didn't enjoy being pregnant and I certainly didn't enjoy childbirth as both my epidurals failed and I felt everything! But holding that precious little boy in my arms that first time I felt so overwhelmed by the love I felt. Max slept almost the whole time we were in the hospital, we thought we had an 'easy baby'. My mum jokes that Max stole the epidural from me and that's why he was so sleepy. Taking him home from the hospital was one of the scariest days of my life. I thought it was strange that they just let you walk out the door with your baby. Shouldn't there be a test or something that you have to pass first?! Once we got home I was terrified of anything happening to my little boy. I was scared to fall asleep in case he suffocated or stopped breathing. When he finally 'woke up' around day 3, we knew we had a livewire on our hands!