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.
Thursday, September 29, 2011
Tuesday, September 27, 2011
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.
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.
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