Nico is in hospital... again... but this time a planned stay. You'd think that would be better; it's not. He is back to his worst and there is not a damn thing anyone can do about it it seems. So why am I on the laptop writing this post or this on to Brooklyn instead of soothing him? Same reason anyone visits a psychologist. Therapy.
His PEG is in, the procedure (which is not classed as surgery) went well but it seems that Nico's immune system must be weak because all signs point to infection. Screaming pretty much constantly, not sleeping more than 30 minutes, temperature of 38-39.7 for over 24 hours despite panadol... and several other pain relievers. He is flailing around, back on oxygen as a precaution, on IV antibiotics. Nurses see traits of seizures in his behaviour but the neurologist hasn't been in yet. He has been told all that Nico does in the past and is confident they are not seizures but I want him to see for himself and then tell me. If they are, from what I can see he only does this when there is something wrong, like infection... which may explain why 2 x EEGs have come back clear. Or maybe it is just his body's reaction to pain/ infection/ frustration and is not seizures at all
I can't put into words what I am feeling. But I will try.
Drained.
Done.
Heartbroken.
Ready to Run.
Helpless.
Pretty Effing angry at the world.
I just look at his gorgeous face and the last 16 months goes through my head and it is all so wrong. Half his life in hospital. 4 operations if you include this, 6 times under general anaesthetic, 6 further hospital admissions. How can this be right???
For a boy so weak, I haven't met one stronger. I know there are kids and parents in worse situations and am grateful it's not any worse, but he is my hero.
PS If you are wondering what a PEG is, it looks like this but don't look if you don't like medical stuff. Nico's doesn't have all the tape on and actualy looks a lot better but it gives you an idea.
From Little Things... Big Things Grow
Monday, January 31, 2011
The Weakness and the Strength
Nico is in hospital... again... but this time a planned stay. You'd think that would be better; it's not. He is back to his worst and there is not a damn thing anyone can do about it it seems. So why am I on the laptop writing this post or this on to Brooklyn instead of soothing him? Same reason anyone visits a psychologist. Therapy.
His PEG is in, the procedure (which is not classed as surgery) went well but it seems that Nico's immune system must be weak because all signs point to infection. Screaming pretty much constantly, not sleeping more than 30 minutes, temperature of 38-39.7 for over 24 hours despite panadol... and several other pain relievers. He is flailing around, back on oxygen as a precaution, on IV antibiotics. Nurses see traits of seizures in his behaviour but the neurologist hasn't been in yet. He has been told all that Nico does in the past and is confident they are not seizures but I want him to see for himself and then tell me. If they are, from what I can see he only does this when there is something wrong, like infection... which may explain why 2 x EEGs have come back clear. Or maybe it is just his body's reaction to pain/ infection/ frustration and is not seizures at all
I can't put into words what I am feeling. But I will try.
Drained.
Done.
Heartbroken.
Ready to Run.
Helpless.
Pretty Effing angry at the world.
I just look at his gorgeous face and the last 16 months goes through my head and it is all so wrong. Half his life in hospital. 4 operations if you include this, 6 times under general anaesthetic, 6 further hospital admissions. How can this be right???
For a boy so weak, I haven't met one stronger. I know there are kids and parents in worse situations and am grateful it's not any worse, but he is my hero.
PS If you are wondering what a PEG is, it looks like this but don't look if you don't like medical stuff. Nico's doesn't have all the tape on and actualy looks a lot better but it gives you an idea.
His PEG is in, the procedure (which is not classed as surgery) went well but it seems that Nico's immune system must be weak because all signs point to infection. Screaming pretty much constantly, not sleeping more than 30 minutes, temperature of 38-39.7 for over 24 hours despite panadol... and several other pain relievers. He is flailing around, back on oxygen as a precaution, on IV antibiotics. Nurses see traits of seizures in his behaviour but the neurologist hasn't been in yet. He has been told all that Nico does in the past and is confident they are not seizures but I want him to see for himself and then tell me. If they are, from what I can see he only does this when there is something wrong, like infection... which may explain why 2 x EEGs have come back clear. Or maybe it is just his body's reaction to pain/ infection/ frustration and is not seizures at all
I can't put into words what I am feeling. But I will try.
Drained.
Done.
Heartbroken.
Ready to Run.
Helpless.
Pretty Effing angry at the world.
I just look at his gorgeous face and the last 16 months goes through my head and it is all so wrong. Half his life in hospital. 4 operations if you include this, 6 times under general anaesthetic, 6 further hospital admissions. How can this be right???
For a boy so weak, I haven't met one stronger. I know there are kids and parents in worse situations and am grateful it's not any worse, but he is my hero.
PS If you are wondering what a PEG is, it looks like this but don't look if you don't like medical stuff. Nico's doesn't have all the tape on and actualy looks a lot better but it gives you an idea.
An Apology and a Thank you
Dear Brooklyn
It's been a tough 16 months for us all but we worry for you the most. 16 months is almost half of your life, and I am missing chunks of it. Living in hospital for 3 weeks before Nico's arrival, spending at least 4 hours a day at the hospital (including the travel time) visiting your brother for more than 7 months after that, and even when he finally got home, things didn't get better. Appointments and admissions, as well as the hours of screaming each day even when we were home, have all stolen your mother away from you. I used to get up at 5.30am to visit Nico and be home by the time you finished breakfast, just so that I could spend the day with you twice a week. It is not the way a usual family does things. thankfully you don't know anything else. I am sorry for not being there every moment, ferrying you around and most of all I am sorry you won't have a regular childhood. We promise to do our best to make it as close as possible
I am even writing this from a parents room in the hospital. You are at your friend Riley's place. You have told me many times you are going to marry him. When you pretend to be Cinderella and I ask you who your Prince is, you tell me Riley. I am not too sure you have made up your mind yet though, which I am glad about, as you also tell me you want to marry Kam and Max.
None of this chaos seems to have affected you too much, you don't make a fuss when we leave you at the and you still give us cuddles,. I am not sure that you will be too happy with me by Wednesday though, so I am apologising in advance. Tomorrow Helen and Holly are picking you up from daycare and you may have to stay there the night. On Wednesday I promise, even if Nico is at the "big hosfiddle" you can come with me. Hopefully he will be at the little one though. You own that place and have all the nurses wrapped around your little finger, they have watched you grow up as well as your brother.
So THANK YOU my princess, for being the most amazing, accepting, flexible 18-35 month year old on the face of the planet. Without you, I would not have gotten through this. not only because you were so easy to offload, but because when all Nico's issues have me in a heap, you keep me smiling and sane.
And thank you to the amazing friends who have taken Brooklyn in and made this whole process easier for her (and me!!) Without you, she would have been spending countless hours in hospitals and waiting rooms, and our relationship would have truly disintegrated aws I would have been forced into telling her "sit there, be quiet, don't touch and don't move"
It's been a tough 16 months for us all but we worry for you the most. 16 months is almost half of your life, and I am missing chunks of it. Living in hospital for 3 weeks before Nico's arrival, spending at least 4 hours a day at the hospital (including the travel time) visiting your brother for more than 7 months after that, and even when he finally got home, things didn't get better. Appointments and admissions, as well as the hours of screaming each day even when we were home, have all stolen your mother away from you. I used to get up at 5.30am to visit Nico and be home by the time you finished breakfast, just so that I could spend the day with you twice a week. It is not the way a usual family does things. thankfully you don't know anything else. I am sorry for not being there every moment, ferrying you around and most of all I am sorry you won't have a regular childhood. We promise to do our best to make it as close as possible
I am even writing this from a parents room in the hospital. You are at your friend Riley's place. You have told me many times you are going to marry him. When you pretend to be Cinderella and I ask you who your Prince is, you tell me Riley. I am not too sure you have made up your mind yet though, which I am glad about, as you also tell me you want to marry Kam and Max.
None of this chaos seems to have affected you too much, you don't make a fuss when we leave you at the and you still give us cuddles,. I am not sure that you will be too happy with me by Wednesday though, so I am apologising in advance. Tomorrow Helen and Holly are picking you up from daycare and you may have to stay there the night. On Wednesday I promise, even if Nico is at the "big hosfiddle" you can come with me. Hopefully he will be at the little one though. You own that place and have all the nurses wrapped around your little finger, they have watched you grow up as well as your brother.
So THANK YOU my princess, for being the most amazing, accepting, flexible 18-35 month year old on the face of the planet. Without you, I would not have gotten through this. not only because you were so easy to offload, but because when all Nico's issues have me in a heap, you keep me smiling and sane.
And thank you to the amazing friends who have taken Brooklyn in and made this whole process easier for her (and me!!) Without you, she would have been spending countless hours in hospitals and waiting rooms, and our relationship would have truly disintegrated aws I would have been forced into telling her "sit there, be quiet, don't touch and don't move"
Saturday, January 29, 2011
Princess Brooklyn: 35 months.
Inspired by Toushka I have decided that I will write to my Princess and tell her about herself. It is a little late to start but better than never
So Brooklyn this is you.
This month was your third Christmas and New Years. I was so excited because this was going to be the first one you understood. Not as excited as you though. For two months you had been telling everyone, strangers and friends alike, that Santa was bringing her a pink scooter with lights
Your Nanna Shona came to visit us for Christmas and the beginning of January. This was the third time she had met you and she was amazed at how much you had changed in a year. You are a real little person now and can have conversations about everything... even though sometimes you don't make sense.
"I just think umm, 12 oclock is, over there and presents because the lady did and driving" is an example of what might come out of your mouth when you want to be the centre of attention but haven't actually got anything to say. Another would be: "This is a cucumber, because its not a cucumber".
You're favourite thing to do is dance and act, and I must say: you are great. All you have to do is see something once on TV or something your friends do and you can re-enact it. The most common little drama you put on is putting your hands over you mouth, looking into them and saying "Oh no, my toof's fallen out! I beda go pud it nexta my bed right now!" If you can dress up too, then it's even better
I would like to freeze this moment in time and keep you this age. Next month you will be 3. When I say "My daughter is 2, you still sound like my baby. When I say I have a 3 year old, I will have to admit you're growing up. Maybe you will stop our funny game of "Hey Mama, guess what? ... I love you!!!!!" Maybe when I say "Hey Brooklyn, guess what?... I love you!!!" you will no longer reply with "Awww!" and reply "ooooooooooh, Muuuu-uuummmmm!!"
I am not allowed to dress you anymore. You have to do it yourself, including choosing what to wear. Sometimes I don't agree with your choices but if you want to wear an oversized t-shirt, ballet skirt and stripy jandals (yes, you call them jandals, thank god, not thongs) to the shops, that is what you wear. The only time I make you change is if you are wearing your favourite party dress and we are going to the park. Then I have to convince you that shorts/jeans are a much better idea.
You are such a loving little creature. Your brother thinks you are the best. You can see it in his eyes. All I have to do is say "oh, here comes your sister!!" and he starts to smile. I think he knows what's going to happen and when you jump to peek over the change table and shout "Boo!" he starts to laugh. You call him Mister Man or Our Little Man and love to cuddle and kiss him. Every time you make him laugh or smile, you get so excited and announce it to us. If he is in a bad mood and won't smile or laugh, you get upset.
We got some apps for you on my iTouch last week - games, stories and number/letter practise - and you already know exactly how to unlock it, find and open the apps you want to use and get them started. Close My Eyes by Little Bella has become a favourite bedtime story.
Nanna and Grandad are on their way to visit next week, I just know they will be even more in love with you than they were 4 months ago. I can't wait and neither can you. "Aww, grandad is a funny man. He can change his shirt colour" you told me today. I have no idea what you meant but you seemed impressed.
Hey Brooklyn. Guess what? I love you
Mama
So Brooklyn this is you.
This month was your third Christmas and New Years. I was so excited because this was going to be the first one you understood. Not as excited as you though. For two months you had been telling everyone, strangers and friends alike, that Santa was bringing her a pink scooter with lights
Your Nanna Shona came to visit us for Christmas and the beginning of January. This was the third time she had met you and she was amazed at how much you had changed in a year. You are a real little person now and can have conversations about everything... even though sometimes you don't make sense.
"I just think umm, 12 oclock is, over there and presents because the lady did and driving" is an example of what might come out of your mouth when you want to be the centre of attention but haven't actually got anything to say. Another would be: "This is a cucumber, because its not a cucumber".
You're favourite thing to do is dance and act, and I must say: you are great. All you have to do is see something once on TV or something your friends do and you can re-enact it. The most common little drama you put on is putting your hands over you mouth, looking into them and saying "Oh no, my toof's fallen out! I beda go pud it nexta my bed right now!" If you can dress up too, then it's even better
I would like to freeze this moment in time and keep you this age. Next month you will be 3. When I say "My daughter is 2, you still sound like my baby. When I say I have a 3 year old, I will have to admit you're growing up. Maybe you will stop our funny game of "Hey Mama, guess what? ... I love you!!!!!" Maybe when I say "Hey Brooklyn, guess what?... I love you!!!" you will no longer reply with "Awww!" and reply "ooooooooooh, Muuuu-uuummmmm!!"
I am not allowed to dress you anymore. You have to do it yourself, including choosing what to wear. Sometimes I don't agree with your choices but if you want to wear an oversized t-shirt, ballet skirt and stripy jandals (yes, you call them jandals, thank god, not thongs) to the shops, that is what you wear. The only time I make you change is if you are wearing your favourite party dress and we are going to the park. Then I have to convince you that shorts/jeans are a much better idea.
You are such a loving little creature. Your brother thinks you are the best. You can see it in his eyes. All I have to do is say "oh, here comes your sister!!" and he starts to smile. I think he knows what's going to happen and when you jump to peek over the change table and shout "Boo!" he starts to laugh. You call him Mister Man or Our Little Man and love to cuddle and kiss him. Every time you make him laugh or smile, you get so excited and announce it to us. If he is in a bad mood and won't smile or laugh, you get upset.
We got some apps for you on my iTouch last week - games, stories and number/letter practise - and you already know exactly how to unlock it, find and open the apps you want to use and get them started. Close My Eyes by Little Bella has become a favourite bedtime story.
Nanna and Grandad are on their way to visit next week, I just know they will be even more in love with you than they were 4 months ago. I can't wait and neither can you. "Aww, grandad is a funny man. He can change his shirt colour" you told me today. I have no idea what you meant but you seemed impressed.
Hey Brooklyn. Guess what? I love you
Mama
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