you know you go to much when....

*You know you go to hospital too much when your 5 year old starts talking about their emotions by blood pressure. Lately he when he feels sad, tired, upset or something is bothering him he says my blood pressure is low and then as he starts to feel better he says his blood pressure is slowly going up until he says its normal again and he feels better.

*You know you go to hospital too much when you are going to the er with you child (this was not a life threatening visit, so we could be more relaxed about it.) and you think about what you are wearing in terms of days, whether it will be comfortable to sleep in, sit on a bad chair in, lie in bed with your child, talk to Dr's/nurses in basically live in for as long as possible.

*You know you go to hospital to much when you know which room will be the best one to get in the er. You go with drinks, snacks, books, laptop, shawls to keep you warm and add home comfort, let everyone know by text that you are going there and everyone knows not to worry we will let them know whats happening, that you know exactly what to ask for and who to ask to see.

*You know you go to hospital to much when the reception staff know who you are and who your there to see (mind you they see hundreds of people every day) and say the Dr is running late go for a walk I'll call you when its time.

*You know you go to the hospital to much when you know your way around there like your own home and you find yourself often giving people directions and the thought of moving to a new hospital worries you because you will feel lost.  When your five year old looks at the colour of the lift and knows which appointment we are going to and who we are going to see.

*You know you go to the hospital to much when you start to budget for the cost of going in your weekly budget. $20 a day for parking, $15 a day for petrol, $15 a day for lunch/snack/or a surprise depending what he has done.

*You know you go to hospital to much when your other kids don't even blink when they ask where you are and you tell them, it is part of their normal vocabulary now to hear medical terms being used

*You know you go to hospital to much when your child's file gets heavy to carry around and you don't have to repeat their story more than once that day.

*You know you go to hospital to much when you know the routine of the pre-op room, how the anesthetic goes and what your role is, where to wait, were the very much needed vending machine is while you wait, that you know your way around the theatre rooms and the routine of the recovery room and what to expect to happen and when.

*You know you go to hospital to much when you know the lay of the wards, how they work, where the tea and coffee is, how to pull and and make those awful beds, and that you need to put a blanket underneath to stop from slipping and sliding all night.

*You know you go to hospital to much when if you have a week free from going you feel like you forgot to do something......

No more please

I have a traumatized sad boy on my hands. We have been home from hospital for 6 days and he is sad. He tells me how sad he is. he is constantly saying that his stitches hurt, he goes to show people them but he covers them with his hand. He is telling me he is not doing well and I don't know what to do or where to go. He is back in our bed. He is on antibiotics and he hates them, it is a fight four times a day when it is time to take them. We now have a routine we get it ready, he holds the medicine and hugs me with the other arm he swallows the medicine and then we get a chocolate to get rid of the taste. We go back tomorrow to the hospital, so they can look at the wound, tell us if they find a reason for the infection and maybe remove the stitches which is were there will be a problem. He had stitches removed once after his neuro surgery and he screamed and he hated it, it hurt. He has been talking ever since this last op about how he doesn't want to get the stitches out. I don't know what we will do, i don't think i have it in me to hold him down kicking, screaming, crying, fighting and saying mumma, mumma. I don't feel that i can do it this time, i feel i have held him down enough to get things done to him. I know he has to get them out but how? He has never been sad before and so scarred. It is different this time. He has three surgeries this year on his head plus the countless infections, i just wanna yell enough is enough. We are exhausted. The whole family is exhausted, we are done. And so are the people around us. They are all over it and so are we. Other people have the option of forgetting about it, but we don't. I am angry about cranio it is robbing us of other things in our life. I lose time with my other wonderful kids, i lose time with my husband, i lose sleep and energy, i have lost work as i cant go due to appointments/surgeries, we have lost that ease before cranio entered, we have lost a sense of knowing, lost our security, lost so much. How much more do we have to loose? There cant be that much more surely we have don't have much left our tanks are nearly empty.
 This last week I have had two reminders about why we do what we do for our kids with cranio. One little boy was rushed to intensive care fighting for his life as his pressure became to high in his brain, he was living minute by minute and fighting hard to survive.  He has now been down graded by is still fighting. Another child this week was also rushed to the intensive care fighting for their life due to cranio. Several children have also been taken back to surgery following their cranio surgery because of complications. We do this because our kids have a life threatening condition and we want and have to do every thing we can for them. It is scary. WE are fighting every day with our kids and we are exhausted. People forget that we are always fighting every day, whether its fighting to be heard by the Dr's, fighting to get our appointments, fighting to be understood, fighting the urge to break down and cry, fighting the urge to hide under a rock and take our kids with us, fighting to not hit that person that made fun at our child, fighting about money as having a sick kid sucks you dry, we are fighting to survive with our children, fighting for a normal life, fighting to hold it together. We fight to keep our families together through cranio. So i don't know what to do tomorrow. We will also be at the hospital on Friday for three wonderful hours of testing to see if his brain is working properly and if it has improved, do i want to know, not right now i don't but i don't have a choice for i am his mum and this is what i do. I fight for him.

surgery

In coming back to write i am just trying to remember where i was last time i was here writing it feels like so long ago but also like it just happened. We have had surgery again. After being in the ER we were transferred to a ward for the night. When they came in the next morning they all had another look and decided that surgery was the best option and that Denver would be put on the emergency surgery list, hope fully today but maybe tomorrow. We weren't leaving until it was done and iv antibiotics were to continue. So we just spent the day filling in time and trying to keep Denver from remembering how hungry he was as he was fasting. it was a long day. Denver had to have another CT this morning and he loves having the chance to get out of bed and go for a walk and have a chat to some different people. He is so amazing. He does every thing he needs to and is as still as a statue for his CT. Denver ended up having a melt down about lunch time and then he fell asleep. He was not doing so good this time with being in hospital, we hadn't planned for this and we had no time to do any preparation for this visit and the surgery. It was showing that we were prepared for this. They start getting us ready for surgery as it might happen this afternoon or tonight hope full. and then suddenly there is a theatre nurse ready to take us. Shit, fucking shit, we are not ready. we are off, i take Deni to the toilet on the way so i ring Matt and my mum to let them know whats happening and that we are on the way to theatre. It is the first time that Denver is quite nervous about the surgery, one minute he is all over me and the next he wont talk to me.  He doesn't want to go to sleep normally he is fine but this time he is gripping me and saying mummy it hurts, mummy it hurts. it just breaks my heart i don't want to leave him, but his eyes roll back in his head and he is asleep, so time for me to leave. To the waiting room. I feel scarred for this surgery, i haven't processed it and we don't know exactly what they will be doing. Matt finally arrives.
The surgeon comes and says its all over hes doing really well and they removed the side of the scar and have sent it off to the lab and they will know more once it comes back. Deni is awake and happy to see us. We are back on the ward in no time, settle in for the night. I am happy that the infection is now gone and that it is done.

It started off just looking like a blood blister.

Now it's just a dry crusty puss ball.

And it's exploding.

The green is me outlining the infection so i know if it spreads.

5th infection in this one spot. they just keep getting worse.

Us in the ER, he has his iv going and is fasting.

A smile. Still in the ER.

Straight after surgery. Infected area removed.

Day after. The first scar goes up from the ear this one goes across. So x marks the spot. We call them his pirate stitches.

Looking good. Time to go home.

We leave the next morning. and i walk out knowing that we will be back but choosing to ignore that at the moment.

back in hospital

As you know last week we were off to see the surgeon for the part of Denver's scar that keeps getting infected.
It was like groundhog day. Your surgeon not here you will have to see someone else in a different clinic and he is now fully double booked. Great, seeing someone new always means explaining the whole story again. But he was lovely even after a long weight. I was so happy that there was still infection present (i hate it when you take your kid to the Dr and the suddenly get better). It was just a crusty puss bubble now. He had a good look and said that antibiotics were an option but that since it was a contained infection and he appeared so well that we would leave that for now. He said that he would put us on the surgery list to have the infected part of the scar removed and to try and find what was the course of all the infections. He was not urgent so didn't need to be done in the next two weeks but he would like him done in the next two months. And we left and i was happy, I was heard, he talked to me about the options and the reason behind every thing and he understood my concern and frustration at all these infections. So I left happy in the knowledge that something would be done and maybe this could finally be put towards the middle of my head instead of at the fore front.
Fast forward one hour.
I am sitting in a shopping car park crying my eyes out. Now i don't usually ever cry it is just not me. I always say i wish i could cry more and here i was getting my wish balling my eyes out. This is only the third time that i have cried about this cranio shit, i don't know why it hit me so hard or why today was the day but it was and the tears were fast and free flowing.

It is with disappointment and sadness that i

let you all know that Denver will be facing his

 third surgery for the year. they hope to operate

in the next two months to remove the infected

part of his scar.  they don't know what the

surgery will entail until they get in there and

see what is causing the infection.

love Angy

That was the message that i sen tout letting everyone know what was happening and how the appointment went.

That day i couldn't shake my deep deep sadness. It was just there. It was heavy, so heavy. it was a weight deep inside. it was dragging me down, but i had to go with it and let it do what it had to do.

Crying is such exhausting work, i felt like i had been hit by a bus.

There was a great disappointment within me that people choose not to respond or acknowledge my message. I felt i needed their support and acknowledge meant of what was happening, sometimes that's all that is needed. as people we often don't know what to say but to say nothing at all can be worse than saying the wrong thing.

When i get news about Denver i am often quite and take time to talk about it but there is nothing like a family get together with extended family to get the news out there and the talk going about it at first i was like ahhh i don't know if i want to talk about it, but then it felt really nice to be with these people, they care and i could see their worry for us on their faces and feel it in their embrace so it was actually nice to be there and talking. Thanks Healey's.

Fast forward to today and we are in the ER with Denver attached to a drip and getting iv antibiotics. His infection slowing got bigger in size and just not nice and it started to get sore. It had never been sore before but he was complaining about it and just placing his hand over it. Then in the early hours of this morning it burst. Puss, blood crap oozing out every where. I put a bandage on it and keep a close eye on Denver and sent my sister a message with photos and we decided to see what it was like in the morning. Over night i changed the bandage again as there was so much stuff coming out, he slept well.

When i got up in the morning it looked the same just a bit redder and yukky so i decided Na off to the er this is stupid. So we are now here. We have seen Dr's plastic surgeons and so many nurses. So they cleaned it and it looked like a little crater and it was amazing to watch it quickly fill with puss again. (I love pus) We are here overnight on a drip and then to reassess tomorrow with what needs to be done, whether more anti's or surgery or what. So we wait. We are in good hands, my sister Katy is here playing with us. I will need another big rest after this again.

May this be over soon and may we all move on.

Alone and scared

I am reliving it. From start to finish. The worry, the talking and no one hearing me, the failure I feel about this, knowing I can't protect my son. Tomorrow we go to the surgeon. He has had 8 infections in his scar. 5 in one spot, 2 in another and then one other spot. The one he has now looks nasty and is getting sore. Iknow the trauma of going back there will resurface for him and for me. I sit here in bed at midnight and I can feel the tension in the house, the air, each other and in me. I am scared and feel so very alone. I want to curl up in a ball and sleep. It's just Deni and me tomorrow. I will be strong tomorrow, I will have the best five year old holding my hand as we go up elevators, down corridors and into rooms.
Pray for Deni and pray for me cause I don't want to feel alone.

6 months post op and turning 5

So the end of this week it will be 6 months post op from surgery. Do I feel relieved? No. Do I feel happy?No. Do I feel like it is behind us?No. Do I feel sad?Yes. Do I feel exhausted by it?Yes. Do I think it will ever end? No. Do I think people understand?No.

You may wonder why all of these feelings are here with me and why I don't feel relief. We are having problems with Denver's scar. It is huge from ear to ear in a zig zag, His hair has grown alot lately so other people don't really notice it. Being nearly six months post op it should be healed and not a concern. Denver has had four infections in his scar on his right side and two on his left side. They are always in the same place. The last visit at the surgeon he had had three infections by then and we all thought that now he would not be wearing his helmet any more that he probably won't get any more. If he did get another one I was to ring the surgeon and they might want to go back in and clean up the scar and see what is the cause of the infections. Well he did get another one and I saw it early, so I decided to just treat it myself and see if I could get on top of it and not feel the need to ring the surgeon. I was trying to do any thing to protect Deni from more traumatizing surgery. It healed quickly and with no problems it wasn't as bad as the other infection so I felt good about avoiding the surgeons knife. Last Thursday I walked in the door said hello to everyone and then I saw it. What the hell was it. It looked like dry blood on his scar. Where was if from? Why was it there?
On closer examine and remaining calm I saw that it looked kinda like a blood blister, or hematoma or ???
I checked with every one that had been with him that day if they had noticed it ans no one had, some times only a mum notices these things.It wasn't there this morning. I asked Denver if he had bumped his head today and he said no, which I fully believe as if he ever bumps his head even slightly it is a very traumatic thing for Denver. His kindergarten also rings me if he bumps his head so I knew it wasn't from that, so what was it?
So off to the GP the next day and they don't know what it is, but it doesn't look like an infection, he is fine. I rang the surgeon knowing we couldn't avoid it this time. So we are now going there this Friday, what a way to celebrate 6 months post op. I am scared of what he will say and what it will mean. There is no relaxing with this cranio shit. I am always checking the scar making sure its OK and that there are no changes and it looks OK. But also not trying to scare Denver, i think he is just used to me now. It is now drying out a bit and looking a bit like an abscess. He has also had a few headaches in the last two weeks, with any other child I won't really pay that much attention to the odd headache, but with Denver it could just be a head ache or it could be more. If only I could protect his brain. There is already damage to the back half and that's more than enough thank you. I want it to stop, give us a break please. The exhaustion with cranio came back with the new strange thing on his scare. On face book that day i think my status says it perfectly.

I am not angry, bitter or frustrated.
I am just done.
Done with cranio.
Done with what it has done to my son, my family an me.
It's a grey cloud that just won't shift.

On a brighter note Denver turned 5 yesterday, the big all important 5. We celebrated with a party on Saturday and a family dinner last night. I was sad leading up to it as Denver is my last baby and he will now be five. I have enjoyed the early years so much with all my kids. But I was also so happy that he made it. My sister and i called i 'stayin alive at five'. He was so happy to be turning five and after such a big unknown year it was a relief to make it and get there. So my baby is now five and I am so proud.
What i wrote for Deni on his birthday.

Early this morning five years ago I gave birth to my fifth baby and second boy, Denver James.
As we looked at each other for the first time, it was a look of there you are, we already know each other.
I miss having him to myself in my belly or snuggled at the breast, But I love to feel him in my arms for huggies and to see that smile on his face.
He has taught me so much in our five years, more than I thought possible.
He has the most deepest and richest love for me and my family.
He has taught us courage and to never give up, that every thing will be alright with a kiss and a cuddle.
I love you my Deni.
Thank you for choosing me to be your mum.
I love you so.

Life goes on....

Life is still going and as always it has it ups and downs. Denver is loving kindergarten and being back with his friends and feeling normal now that he doesn't have to wear his helmet. He has the sparkle back in his eyes and is confident. He is going so well, but sometimes it is as though we have gone back in time and we are back just after the operation. If he bumps his head even just a tiny bit, the fear and trauma that that can bring Denver is huge and normally takes quite alot of hugs and soothing to reassure him that he is OK. he had his first fall at kinder and knocked his head. His teacher was wonderful and sat him down and made sure he was fine, before calling me and having a little panic attack. He was fine and we all survived.  I overheard Denver having a conversation with Terry in the cars about operations. He was explaining how the first one hurt and wasn't nice but that the second one didn't hurt and they took all the hurts away and the bad bits so the second one was much better. So that was so nice to hear and really reassuring that he was going OK and wasn't angry about it at all, or untrusting.  His hair is growing, oh so slowly but growing. 

The only down side is we are still just waiting and seeing to make sure his brain is OK. He has had a few things that are worrying me. He has had a day sleep every day this week, which normally wouldn't raise alarm bells so others but for Deni it is a thing to watch as it may mean he is not sleeping well at night again which could be due to brain pressure. yesterday we were painting and having fun and he could not remember the colours. Denver knows his colours but he didn't yesterday. His favorite colours are orange and blue and he couldn't remember their names. Oh my heart broke, but in true mummy style we just move on and keep painting. But i am now on high alert (as if i never was). The other thing i am worrying about is school next year. With all this going on is he going to be ready, is his brain going to be able to cope, will he be OK? It is a struggle between wanting him to be 'normal' and go with the flow and do what we had planned for him or stopping and going no, our kid has special things we need to take into consideration. Denver is so excited about going to school next year, if we decided to keep him in kinder for another year it would be a blow for him. So...

But Denver is here and doing well and so is the rest of the family.

We only have to go to the hospital every three weeks now so that is such a welcome relief. For the most part our days are 'normal' just like any other family. I am getting used to the new Denver but sometimes my heart cracks when I see his scars and wish it could be different for him. But it's not and we are learning to live with cranio being part of our lives.