5 weeks post op, appionments starting again.

We are now five weeks and a few days post op. It has been a better week emotionally this week. I went to a women's circle on the weekend and got to focus on my feeling and why they were still so intense and haunting me so. It felt like a release. So it has been a better week for me we have had a few things going on, Deni has got an infection in his wound which i noticed one night during my nightly inspections. Just some dry puss but then if you touched near it some puss oozed out. It was late on a Saturday night and after much talking with my sisters and dad who are all in the medical profession it was decided that unless he developed a fever or became unwell it was fine to leave it till morning. So we went to bed and he was fine at the hospital the next morning they did a swab and he got some anti bodices. The Dr was amazed that he knew exactly what to do when they got the bp machine out, the oxygen reader out and all that other stuff, he didn't like it but he did it. Two more visits later and it's healing nicely although it has been hard to get him back to the Dr's he is just over it.

Might en look like much but it's enough to cause serious problems if left untreated, it you pressed around it puss oozed out, the redness was slowly spreading up the suture wound as the infection spread.

So that sorted it was time to look at the diary and figure out when our next round of appointments started. I had enjoyed a wonderful 2 weeks appointment free and not even looking at my diary. I felt the anxiety arrive the minute I got the diary out. Then I realised that i had lost a referral the one for his special 3d photo's that he needs to get done 6-8 weeks after surgery, I searched everywhere, rang people Na couldn't find it. The panic set in and I had a full blown anxiety attack over a stupid fucking referral, I was so made at myself for losing it, how could i be so careless and stupid to lose it, i was so angry at myself for letting myself have time off, relax,drop the ball and this is what happens. You can't just get in contact with my Dr and get a referral it[s just not that easy it's a full on process to go through the hospital system, it would be more heartache then what it was worth. The next morning i suddenly thought you know what it ain't that bad it can be sorted, it will be OK.  We are straight back into it next week two appointments eye test on Tuesday which is one of the ways they check the pressure on the brain (nervous about this one) and then post op with the surgeon not to worried about this one I think it will just be a run down on what happened but i am hoping we will get some idea of the immediate future for Denver and i will get a new referral and the photo's will just be a couple of days later than planned but in the big picture i now know that that's OK and it will be fine, hos head is not going to change in a couple of days.The Dr's such an ass I'm not looking forward to trying to talk to him, but hey.

Deni's head. I am now starting to accept the new head, I decided I don;t have to like it but I can be happy that this one no longer causes him pain like the old one, this one is different but that's OK too, i will grow to like it and maybe one day I won't notice the bumps, scar and feel the screws and metal that are now holding his head together. may be one day i will be OK with what happened but maybe i won't. I am hoping my feeling might start to change when the helmet comes off and i am just seeing him and not his helmet as well. May be one day i will forgive myself for this and hopefully he will too. I don't know how i will cope with going back to the hospital and starting the round of appointments again, I don't feel as strong as I was before I feel a bit old and withered by the storm that is cranio.

Denver is still showing some signs of trauma associated with the surgery and appointments that we have been too so I am unsure about how he will go. The first appointment we have is an eye test and this is the one I have always had to hold him down for and i am scared it will be worse now. I hate holding him down, it breaks my heart. I am now looking into getting Denver some counselling by a specialist counsellor who deals in this area to see if they can help, I feel that if this is left untreated and ignored it will only come back to hurt us down the long run, no one should have to live with trauma and if they do have trauma i want him to be supported. So that's me, going on a bit tonight but i am nervous.  Send us your strength and love the journey is still going.

Some pictures of Deni's head 5 weeks post op.



4 weeks post op and we are...

It was four weeks post op yesterday. I have been away for four days without Deni or my other kids or hubby and it was wonderful. i went some where where only a few people knew what has happened in my family in the last year and it was wonderful to get out of this world and into that one, it felt like what life did before cranio. it was a relief, like a burden had been lifted for those few days. No one was looking at me like a mum suffering inside, no one knew to ask how's Denver, or whats cranio, i got to have conversations about other things and to think and feel other things. I got to allow myself to be me, just me, not the mum of five and not the mum of the little boy with the funny head and now wearing the helmet. it was so refreshing. don't get me wrong i thought about my kids and Denver often, but it felt like the burden had been lifted for that time, i knew Deni was in good hands even though they weren't mine. it was on the last day that it started to feel heavy again on the inside, it was a feeling i didn't miss. I didn't relaise that alot of the pain and healing would happen after the operation after we walked out of the hospital, after we were home. I thought the hardest part would be the surgery but it's the after marth that is proving hardest. The light at the end of the tunnel feels just as far away as it did before the surgery it doesn't feel any closer.We have had the surgery and while the dr's are happy with how the surgery went we don't know if it did what it was meant to do if it has been a success, if we have to do this again. I thought the wait would be over but it is really just taking off and it's hard work. Denver for the first time refused to talk to some one when they asked him about his surgery, this is a trusted known person to denver and he put his hands over his face and closed his eyes and refused to talk until the subject was changed, this is the first time he has reacted like this and it is worring. But we can just takeit step by step. When i got home and  walked in the door of my home excited to see my family but also trying so hard to resist the urge to push everyone aside scope Denver up and examine his head. but i held back and gave the impression that yep I'm fine i trust you i don't need to examine him head to toe. i got my chance when i went off to have a shower and Denver came with me with me being away without him he was not leaving my side. so in the shower without his helmet on. his scar looks good, little red in some places but overall good. but his head is different again, I'm not sure why maybe the swelling has gone down a bit or some thing but there is now a dip where there wasn't one before and the ridge at the back is more prominent and just a few other changes. so i am thinking well hoping that it's cause swelling has gone down. But i still don't like his new head. I feel terrible thinking that but i don't it's different to me in so many ways. it is a horrible feeling rubbing your sons head for affection and then realising that the bumps you are feeling is screws that are sticking out of your sons skull and they are feeling more prominent and huge and hard. it just sucks. i love Deni but i hate his new head. it holds alot of pain for me, he has a scar on his head and i have a scar on my heart. it is getting better but there are moments like today in the supermarket that it all gets to much and the tears threaten to flow and it's just me walking around the supermarket trying to buy stuff for dinner and decide what to do for dinner this week but at that moment it's all too much. it's funny when things decide to rear their heads. I feel that soem people are judging me for the way i feel and the way i react to things and some of the things i am choosing to do or not do, but unless you have been where i have been and where i am now be gentle with me and just think about how you would feel if the screws were in your kids skull and that your child was the one that now looks different and your child is the one who is being stared at when your out and about in public trying to do the normal everyday things.  Denver is meant to be going back to kindergaren tomorrow he's not sure if he wants to and i am scared for him and for me. I will be thinking of him and hoping thst he is ok, not jumping off any thing, or trying to take his helmet off to show peole and that the other kids are kind and just accept it in their stride. I am hopefull that they will be kind to him and to me tomorrow, it is another step forward for us and even if we are a little shaky we are full of hope and what else is there?

still pressing on..

i am still here and still exhausted, i am waiting for it to get better but it's not. i am sleeping believe it or not i am sleeping really well, but i am still waking up exhausted beyond belief, just having a shower is enough to do it and i am out for the count. i didn't think that it would be this hard being back at home. i am not coping. i am full of worry, stress, anger, sadness, loss, exhaustion, disbelief and the list goes on. i am wondering if i am the only one to feel like this once the first cranio volt operation is done, shouldn't i be jumping for joy, embracing the new and feeling relieved but i just feel like that was only the beginning of this long journey. i know that my journey isn't as bad as some and has better out comes than alot of other parents struggling with their children's life threatening illness and conditions, but i can't seem to pull myself out of the whole. I am finding it all really overwhelming and exhausting. i am over whelmed by what we have all been through, what we will continue to go through and every day life feels like too much and is so hard and overwhelming. i feel as though i am sinking. i have a real grief and yearning for life as it was before cranio took over. a life care free, appointment free, scar free, helmet free. i don't want to live and breathe this anymore. at what points do other parents of cranio kids feel OK with it all, i feel as though i am a big suck and need to suck it up. i found myself running away and hiding from people in the supermarket today i don't want to fake smile anymore and say yep it's all fine. you know what Deni is doing really well it's his mum that is struggling. i have decided to go away for the weekend husband and kid free, yep i feel bad leaving them at Easter going some where i didn't think i would go but i need to recharge, i need a break otherwise i will break.  is it just me or are there other cranio mums that struggle so hard. i hope that i am not alone in feeling like this, it is so hard.

i am ...........

We are three weeks post op and day two at home and i am exhausted beyond belief. i don't know if i have ever felt this tired before it feels different this tired. my body is like lead and my brain is in shut down. Deni is doing so well i feel bad about how shit i now feel any one would think that i had the surgery not him. i thought i was doing really well but i think it all hit me the minute i walked in the door. Deni is having separation issues with me, we have been together everyday for three weeks and he has had this huge thing happen to him, i must say i also worry about being away from him. the thought of some thing happening and me not being there is so so scary. it's not that i don't trust others it's all about me and my insecurities. what if he needs me and I'm not there, we have done it all together him and i, held hands through it all. as i write this he is next to me sleeping as he can't go to sleep on his own cause it's to lonely without me on his own. i love my son, he is perfect. but this is so fucking hard. some one said to me the other day at least that's over now it's all done, but you know what it's not I already have appointments for all the follow ups and tests that we have to do next month i thought i might get a little break and find my real life again but it's still at the hospital for now. i want a break but there isn't one not for me and not for Denver. people don't realise that this will continue for the next 12 years we will be doing tests upon tests and hoping that it's all OK. we hope and pray that there will be no more surgeries but in my soul i don't believe for one minute that there won't be more, there is too much stacked u against him medically. the thought of doing more appointments and more tests is pushing me to the edge. i arranged heaps of support for when we were in melb but i am realising now that i need it now that we are home, i am just exhausted and the thought of going back to running a house and doing all those normal things, what the fuck for.  i need sleep and a break, but I'm already on the count down to getting the earlier results of this op. will he hate me for this when he is older, will he lose trust in the medical system, will he become numb to it all. will his children be affected, will i be doing this till i die. i am so exhausted how much longer does this have to go on and no it's not over not by a long shot.

some of the many photo's i have taken during our hospital stay

head before surgery

 

about 3 hrs post surgery

next morning. bruising and swelling starting.

our first cuddle, day after, bliss

swelling and brusing

talking to his brother and sisters, night after op

amazing a smile

great eyes

sleep it's hard to get him to go to sleep, so this is priceless

love

teddy matches

hi mum

friday morning

dr's come to take bandage off

it's a head, a new one

how different is that shape

first time to go outside, 4 days post op

helmet decorating

my favorite photo shows the emotion perfectly

sleeping with the helmet

waiting to leave the hospital

ronald mcdonald house

one week and one day post op

looking good

deni checking out his new head

it feels different

we love sleep

teddy of course gets a matching helmet

gone out for a milkshake