Yeah I'm back, where have i been? I have been hiding, hiding from here, hiding from cranio. But we have another appointment tomorrow and I can't sleep. It's been a while and we have had a few tests and appointments so I will try and give you a run down, here goes.
Eye appointment 7th Feb, these are hard to go to as I know that I will have to hold Deni down and it hurts inside.
We have the women i like top of her field, knows her stuff doesn't muck around there is no bull shit with this women and i like her she just tells it like it is. She is not surprised but the results of Deni's pressure test she says I could have told you by the u/s that he has pressure in his brain. His disc's at the back of his eyes are full and his optical nerve is full and large. Yep he diffidently has pressure. She wants to know when are they operating, I don't know. How soon do you think he needs it I ask? She says the sooner the better some kids eyes will last 6 months some 6 weeks some 6 days you are lucky that his eyes are doing OK and that it has not affected his vision. I will need to see him every 4 weeks to re check his eyes but if you have surgery before I next see you come back 4 weeks after surgery. So you think it will be soon? Yes i do she says. What will happen if we didn't do the surgery or treat him? She just bluntly says if we lived in a third world country and we didn't treat him his vision would slowly get worse and he would then just go blind if left untreated so come back and see me in 4 weeks if he's not been operated on by then. Yep I told you she was blunt but hey at least we know exactly where we stand and that feels better then being left wondering.
I can't imagine having a blind child. Blind yep she said blind. Holy Shit. That would be so so had for him and every one. I can't stop thinking of all the things he wouldn't be able to do if he went blind, it's hard to watch your child run around happily knowing what i know. I just want to protect him.
Friday 11th of Feb. Appointment with every one again, 6 doctors and us.
I feel better going this time I know what to expect there will be alot of them in the room so at least this time I won't be surprised. But hey the main Dr is different and i don't like this one where's the other one, this one is rude and arrogant. I hate the set up of this room we are sitting and they all stand in this tiny room it;s like they are all towering over us. The plastic surgeon comes and touched Denver and feels his head but he didn't ask Deni if that was OK or introduce himself to him. He talks as though Denver isn't there as though he can't hear what he is saying. I have blocked out so much of this appointment for self protection i think because he was so awful. He said things like "he's not that bad looking for a cranio kid, well he's not ugly." "is this his normal hair cut or did he do it for the surgery? I won;t like to see him with this hair cut again." "Well should we do surgery?" "I haven't seen his CT yet lets have a look?" "Yep he needs surgery, look at that." He comes and grabs the back of Deni's head "yep look at this he differently has the bullet at the back, for sure." What a prick and that's no even every thing he said that insulted me. The neuro surgeon was like yep we need to do surgery. As was every one. The plastic surgeon just keep crapping on about Denver's age, he's 4 it's going to be so much harder, his bone is harder, he won't recover as well, it will be longer more complected surgery, there are more risks. With a baby we can just basically cut through their bone with scissors but he's four and it will be really hard. Shut the Fuck Up you moron. My sister Janice just goes to him so have you operated on four year old before? Well how dare some one ask him a question, of course he has, even older ones in fact. I ask what will he look like after surgery can we expect much swelling, bruising etc? No No No I won't touch his fore head so no he will look fine. Not much different. Right we have to get him in. I don;t want tow wait to long, it's not urgent but I want it done in the next couple of months he can't wait till the end of the year or any thing, it will just get harder to do, lets move it around and see when we can get him in. Right thank you we will send you a letter. I then dare to ask to see a social worker and every one falls silent and stares. Why Why would you want to do that? I am shocked by their response everyone keeps telling me I should already have one and they look like I've asked for a miracle. I just want a social worker to talk to about getting accommodation and help with parking. They all breathe a sigh of relief, well that's OK then.
I hated this appointment, I was shell shocked and stunned they were so rude and spoke as though Denver wasn't even in the room. This just sucked. I get angry really angry after the appointment, how can they treat us like that how can they talk about Deni like that he's my son. What pricks and I have to trust them with my son.
1st March. We make it to another eye appointment.
I hold him down he screams and struggles but I keep holding him, They finish putting the drops in his eyes that sting and make it hard for him to see any thing and he just hugs me and says mumma, mumma over and over again. The first lot of drops don't work and we have to do it again. He is ready this time and tries to get into the fetal position to protect himself while on my knee, he is covering his eyes. We force his hands away and do the drops again. It breaks my heart, it is hard not to make them stop. Mumma, Mumma and my heart breaks again. I am sorry Deni.
This time they have found swelling in both of his optical nerves. It has started. He still has good vision today but the pressure is there and worse. The swelling is not a good sign, why, why why? Can't it just leave us alone? Why is every appointment more bad news? Why can"t we just be normal have no changes why do we have to be the rare ones? I don't know what to do with this. I hug Denver.
We have received a date for his surgery. We have decided only to tell immediate family of the date because we have decided not to tell Denver yet or his brothers and sisters. They don't need to know yet. Days feel like weeks for kids and weeks for months when waiting for some thing. We don't want them to stress and worry, Terry has already come home from school on the day we had the last appointment because he started to have an anxiety attack about it. We don;t want them to know yet, we will tell them but when it is closer. I would love to be able to tell more people but I don;t want to deal with everyone Else's energy and anxiety about the surgery, we already get it enough with just the normal day to day and the constant testing. I can't deal with any one Else's stress, worry, fear I have enough of my own. And I am protecting my kids they know he is having it and we will tell them with enough time to prepare them. It will turn their world upside down too. They have the worry of the operation on their brother, mum and dad will be away while it happens, people will ask them how every thing is. If we can spare them any stress, worry or anxiety we will and that means not telling others. Don't stress we will tell you before it happens, but in our own time. I am glad we have a date but I hate it too. How do you say good bye to your son and give him over knowing that they are going to take his head apart? How will I survive the day? Do I have people with me to support me? Or will I want to be alone? It is going to be one long long day. I don't want to do it, but I have no choice. I will just have to keep loving him and my family and trust it will be OK. I always ask the Dr's what is the risk of death what's the risk of some thing going wrong. Everyone says don't think about it he will be fine he won't die he will be fine nothing bad will happen to him. But you and I don't know that. He might be the one that doesn't make it. or the one that has a complication, r becomes disabled from the operation, or his loses his sight. Don't tell me not to think about it or talk about it. I have to face it I need to. This is not with out serious risk and I need to face that and know it. I need to be prepared that the Denver we send in may not be the same Denver that comes out. I pray and hope that it will be fine but it might not be too. Don't try to protect me from it hold my hand and help me with it. I need you like you won't believe. Be my strength, but don't expect any thing back, I am spent, I have no more to give, but I need to receive. As the date gets closer forgive me for anything I may do, but a mother is slowly breaking on the inside. It is hard, harder than I ever thought it would be. I am tired, I am sad, I am scared, but I am hope full.
This red scar is all that's left from Denver's pressure monitoring surgery.
Pray for us and send your love and strength we have another appointment tomorrow.
Love my boy.
