here we go again

Tomorrow we go back to hospital for an appointment at the wound clinic again, we will be three weeks post op. I must say that this time last week i was confident about how it was healing, it was clean, small, and normal colour. But this week a stitch came out and so did puss. Not alot but it was there. So i really just left it alone and a few more stitches have come out and so has some more puss and yesterday the wound started to go a bit red and today it is very red and raised, it looks sore and not quiet right.  So i am not confident tomorrow that it will be a great appointment. I don't think they will do anything tomorrow but i think it will course concern and will mean that we are under watch for longer in the wound clinic, it just isn't healing properly, its like that section just cant seem to heal completely. I think they will say this isn't some thing we normally see, not sure whats happening here, lets watch and see what happens.
I am in contact with many many parents across the world that have kids with cranio (my strength comes from them, when i need it most) and alot of our kids are being diagnosed with ADD, ADHD and things like that. It is happening after surgery and when they are slightly older, we are beginning to think it cant be by chance that so many of our kids with cranio that have had the surgery are now getting diagnosed with this. It is such a concern especially after our appointment with the neuro psychologist the other week and once you are aware of some thing you start to see it every where in your child. I do not want to label Denver but its so hard. I am parenting a child that has suffered so much trauma in the past year, he can be really hard to parent and so exhausting. He is high maintenance at the moment and I know that it is natural for him to feel insecure and scared about not knowing what is going to happen to him next. He is missing out on normal five year old stuff. It can be hard to be with him all the time he is very full on and loves me to death often, but it can be just as hard to be away from him. I suppose we are both insecure and in need of the security that we get from each other.
So tomorrow we go back and it starting to feel like visiting and old friend who we catch up with every couple of weeks. If only we could do it over a pot of tea.

Today i did something for my five year old son that i never thought i  would find myself doing. Today we went to the local Dr's to get a mental health plan, so that he can go to a psychologist to help him deal with all that has happened this year and the trauma that he has experienced with all his surgeries, appointments, tests, pain and he's experiences in the medical world and that he often has to leave his five year old world and enter one that no child should have too.  He is not doing great since his last surgery, he looks great to every one else, but it is the way he is at home, with me and some things he says, i know that he is not right inside and we need to get any help we can so that he can get on with life and being five.  We had to cut his appointment on Friday short, he was meant to be having his neuro-psychologist testing, he had it done before surgery and they wanted to do it again at 6 months post op to see if there had been any change. He just couldn't sit still, he didn't want to be there at the hospital, he didn't want to answer questions, he was done and with good reason to it was our second day in a row there and he had had enough.  The Dr called it off after 30 Min's and spoke to me about why. She said he was just not doing well within himself, that he was struggling with having to be there. She then spoke about how he was so jittery and that he was constantly moving around and couldn't concerate and do the test today. She felt that all the infections he had had and all the antibiotics that he had been on in the last six months and the fact that he had emergency surgery the week before were effecting him. She also spoke about his inability to concentrate and focus his lack of attention a few sentences that she said reminded me of ADD and stuff like that, she is concerned. So we will reschedule for Dec-Jan and hope that it has all settled down by then and that he would have started his counselling and start calming down and doing better within himself.

I feeling that my other child are missing out. They are missing out on me, i don't feel like i can be there 100 % for them as I often feel so spent after dealing with Denver and all that is happening with him, just trying to remember all his appointments can be exhausting. Denver takes up alot of my time and energy. He doesn't deal well with sharing me and me giving attention to the other kids, he has always, always been a huge mummies boy but he is getting worse. He always wants to sit on me, be with me, be touching me, being the centre of my attention, he is getting more and more full on. His Dr's say that this is part of him trying to deal with the trauma that he has suffered and this is one way that it comes out. He is happy to go to kinder but is very sad when i pick him up, it's like he can only cope with being away but only to a certain point. I get a break when he gets to play with his cousins, I think he feels safe and secure when he is with them and that no harm will come to him and that they won't ask him any questions. He has also been really tired again since the surgery, its like ground hog day, like back the way it was before. So it is one day at a time some days i take it by hours or minutes.

I am sick of this subject, sick of feeling like i am just managing to make it through the day crawling to get to the finish line. I know that you are probably so sick about reading about it as well, I want it to leave my brain. I didn't realise that this grieving process for me would take s long, i keep getting thrown curb balls t deal with and i feel i cant keep dodging them. I gave birth to a perfect healthy baby boy 5 years ago and i long to feel the peace i had then when he was in my arms, not the sorrow i feel now.

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.