Again. Round and round it sometimes appears is the direction our life goes in.
She's sick. Not so sick that we need to race her to hospital. Just altogether exausted, constant low grade temperature, looking awful sort of sick. She's breathless, and more breathless than I remember her being for a long while and that sort of scares me a little. She can go from ok to sobbing hysterically in less than 10 seconds. She has people that don't know her asking me what's wrong with her, she looks like she hasn't slept in weeks. So yeah, she's sick.
We are in our final week before Intragam time. That is always a shocker. Even when she is "well". It is when her immune system is returning to it's crappy normal existance. So she is tired, catching more of everything and feeling not so great.
I am glad we are seeing our paed( I know he's technically hers as he is a child doctor but hey he is such a part of our life that I think we have earned the right to say he's ours :) ) on Thursday when she has her infusion as I want him to give her an all over check out to see if he can figure out what is going on.
So it will be a long few days with a little girl not very well. Feel better soon princess xxx
Saturday, August 22, 2009
Thursday, August 20, 2009
The wisdom of 6 year olds
She is wise beyond her years our youngest daughter, and never fails to make me laugh.
The bath last night. The girls playing at being adults. Jess says to Chloe, where's your husband ?
Chloe says " Oh I broke up with him"
J says " Oh no, why ?"
C answers " because he got dumb and I can't live with dumb "
Precious girl, no person should have to live with dumb. Now please hold onto these thoughts till you are an adult :)
The bath last night. The girls playing at being adults. Jess says to Chloe, where's your husband ?
Chloe says " Oh I broke up with him"
J says " Oh no, why ?"
C answers " because he got dumb and I can't live with dumb "
Precious girl, no person should have to live with dumb. Now please hold onto these thoughts till you are an adult :)
Saturday, August 1, 2009
The week that was
It was one of those weeks. Monday we headed up to see the paed. Who we really respect and like, who cares for Chloe like she exceptionally precious. Who has made some calls that appear left of centre, but are then correct.
But this appointment wasn't really for the medical stuff. Of course it ended up being. It was infusion time this week. And Chloe has crappy veins (that is the nice way of describing them:) ) And I am not exagerating when I say that dr's fear having to cannulate her. Partially because her veins are so bad but partially because they really know her, they really like her, and they hate having to put her through it. It is not that they don't like the other kids, no no no. It is just that many of those kids are one off stays. It is horrible cannulating them, but then they go home and lots never ever return to hospital as a child again. So the pain is still the same but they don't have to do it over and over.
And our paed wanted to send her to theatre to have a drip put in every month. The anaesthetic gas makes veins pop up. Sounds ok. Except she has a fear of the mask that contains said gas. A huge fear. The thought of it causes her to hyperventilate.
(Yes we are seeing a psychologist to help our baby with these awful fears, that are her realities)
And she had a bad reaction to her last anesthetic. And she has crappy lungs. And a bit of a crappy heart. And you know she has so much medical intervention we just don't want unnecessary stuff.
So we went up and we had our chat. And he agreed. We could try one more time on the ward. So Thursday it was infusion day. And so much relied on this working. Not just that it was nicer for her. But that our paed put himself out there again for us. First time failure. I couldn't look at Greg. Second time...it was in. Not quite success. Drips have tissued 5 mins after insertion and also 15 mins after insertion before. No one breathes till the line is flushed and then fluid is attatched. And it worked. And we breathed easily for another month.
So that was one part of the week that was.
One other thing came of our visit to the paed. Chloe's fingers have started to club. Shit. I didn't want that to happen just yet. It's something that happens in people with lung and heart conditions. Normally it happens when there has been a shortage of oxygen for the person. Yes I know she has lung disease. But I sort of thought we had it semi (sometimes badly) but semi controlled. So that sucks. But anyway.
Then the other part. The bit that has made me angry. I am not going to write too much. It has to do with school. And some incredibly unprofessional things that were said.
So the week that was...that's it.
But this appointment wasn't really for the medical stuff. Of course it ended up being. It was infusion time this week. And Chloe has crappy veins (that is the nice way of describing them:) ) And I am not exagerating when I say that dr's fear having to cannulate her. Partially because her veins are so bad but partially because they really know her, they really like her, and they hate having to put her through it. It is not that they don't like the other kids, no no no. It is just that many of those kids are one off stays. It is horrible cannulating them, but then they go home and lots never ever return to hospital as a child again. So the pain is still the same but they don't have to do it over and over.
And our paed wanted to send her to theatre to have a drip put in every month. The anaesthetic gas makes veins pop up. Sounds ok. Except she has a fear of the mask that contains said gas. A huge fear. The thought of it causes her to hyperventilate.
(Yes we are seeing a psychologist to help our baby with these awful fears, that are her realities)
And she had a bad reaction to her last anesthetic. And she has crappy lungs. And a bit of a crappy heart. And you know she has so much medical intervention we just don't want unnecessary stuff.
So we went up and we had our chat. And he agreed. We could try one more time on the ward. So Thursday it was infusion day. And so much relied on this working. Not just that it was nicer for her. But that our paed put himself out there again for us. First time failure. I couldn't look at Greg. Second time...it was in. Not quite success. Drips have tissued 5 mins after insertion and also 15 mins after insertion before. No one breathes till the line is flushed and then fluid is attatched. And it worked. And we breathed easily for another month.
So that was one part of the week that was.
One other thing came of our visit to the paed. Chloe's fingers have started to club. Shit. I didn't want that to happen just yet. It's something that happens in people with lung and heart conditions. Normally it happens when there has been a shortage of oxygen for the person. Yes I know she has lung disease. But I sort of thought we had it semi (sometimes badly) but semi controlled. So that sucks. But anyway.
Then the other part. The bit that has made me angry. I am not going to write too much. It has to do with school. And some incredibly unprofessional things that were said.
So the week that was...that's it.
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