Well, we made it to Reception J on time and managed to arrive with a fasting, but not uncomfortable Jacinta.
It's always better to have sisters there before surgery because you can giggle and have fun rather than sit there worried.
One good thing about having done it all before is that you have pretty good prediction on how long it will all take and when you'll be going in. The first time she had heart surgery I thought 7am meant a 7am op - or thereabouts. Ha! Not so much. More like 8.30. It's handy to know that when you have to keep kids entertained.
So we took family photo with Jacinta and me gowned up to the nines. Then I took her through. It was when we were in the theatre that she saw the warming thingy on the bed, looked around and got her bearings that it all got real.
With a shake of the head that clearly said,"uh-uh" she indicated that she knows how this goes. To her credit, when I said,"yes, we have to", she settled on my lap watching Peppa Pig on my phone and let them put the gas mask on. One thing has changed, they used to flavour the gas with strawberry or chocolate topping. Now they use lip balm - grape in this instance, on the anaesthetists's recommendation.
We went off to fill in the time. Apparently orange pancakes are now a thing and The Secret Life of Pets is too scary for some children. I wound up with more than one extra on my beanbag in the cinema downstairs. Water tastes good with lemon, strawberry and cucumber infusion. The surgeon called as we were finishing lunch. Now he had said he would finish sometime early afternoon. He always SAYS that, but then I either get a call saying it will be another few hours, or I don' t get a call til late afternoon, because it was tricky and it's not perfect bit it will be ok.
I admit, when the phone rang at 1:26pm, I freaked out a bit. I was expecting to have to kill a few more hours, and an early phone call could not be good news.
But it was! The surgeon said it was easier than expected and the result was perfect. This means that the membrane should not grow back again. For context, I have never before heard the surgeon say the word 'perfect' without the word 'not' in front of it. I think he also said the word 'pleased'. These are not words he throws around with gay abandon.
She got back to ICU by about 3:30 which is the earliest ever and they started talking about waking her up that night, which never happens. This is how other people do cardiac surgery!
By the time I came in the next morning she was awake enough to see me and they had 'extubated' her. (Taken out the breathing tube) She wasn't super happy about life, but hey, she had just had her chest ripped open and bones broken and wired back together. That's fair enough! I did notice however that she didn't want to be touched or looked at, which is what happened the last time she had Fentanyl. She was given it this time too.
Then things happened very quickly. They said she could go to the ward that day. We were waiting, not on her recovery, but on a bed in the ward. The first thing she told me was that she was thirsty, and she drank at least a cup of cordial (you go with whatever goes down in some scenarios) in about 2 minutes. After a few hours she had come out of the Fentanyl grumps and was eating food. She scratched at her chest a lot. She pulled out her oxygen prongs. Lucky she didn't need them anymore.
This was in stark contrast to her first ever surgery, where they gave her a day off and just let her rest. Both previous times she was still well under sedation at this point. Now she was up and about. We found a good spot that was comfortable, with me on the bed under her. I'm not sure how usual this is in Intensive Care, judging by the surprised and amused looks we got from passers-by and visiting doctors.
We went to the ward that evening and despite her disagreement with changing spaces, she just got better. Every few hours they took things out. By the Thursday they had taken out her pacing wires and drains. This had never been done with her up and about, and it was one of the most harrowing things I've ever had to participate in. She was fasting for a very long time, because they wanted to use heavy sedation, and this meant she went in hungry and thirsty to do a thing which scared the hell out of her. Then for the rest of the afternoon while she wanted to sleep she was made (by me) to go downstairs and do a chest X-ray (because we had to).
By the end of all this, we just wanted to go home. She was over being touched, she had pulled out her NG tube which meant oral meds from then on, she disliked almost everyone who came into the room. Another room change meant we were in the low maintenance section but she did not agree with changing rooms again. Thankfully a Skype call to home meant she could relax again.
And then, on the Friday, they sent us home. I think I was packed before the doctors even came around. It's interesting, the more we do hospital, the less we feel the need to be there. I remember the first time she went home I was a little nervous about how safe it was for us to be looking after her so soon after surgery (two weeks). Now, I am so over the nights spent in hospital, where the nurses pretty much have to do obs overnight, which almost always results in broken sleep for everyone, that I would rather look after her four days post-surgery by myself at home.
I know that she will sleep better, will feel happier, and will have the food and drink she's used to plus the Peppa Pig DVD and whatever else she feels like doing to hand. You just get better faster at home. Everyone who knows hospitals agrees that if you don't need to be in hospital, it's better not to be there. I did have some messages from friends saying 'don't rush home, make sure you rest', but the chances of rest are so much higher at home.
And you can drive to the mountains at your leisure and visit the Chocolaterie and Ice Creamery.....
Monday, 19 December 2016
Loooong trip to Emergency
Last Tuesday, Jacinta was recovering nicely from surgery and I was getting her dressed, when one look at her scar told me she needed to be checked in Emergency.
What had been beautifully scabbed was now scab-less and weepy. It seemed the edges were moving away from each other rather than closer together. I grabbed my bag and a snack and headed out the door, attempting to arrive soon enough to be out of there and home for school pickup.
Hahahahahahhahhahaaaaaaaa!
Now, we've done this before, twice. Once after the first surgery when some stitches must have stayed in and got infected. They gave us antibiotics and sent us home. Once during her admission from the second surgery when the end of the wound looked at bit infected. They took her into surgery and did a debridement (where they clean out old dead or yucky tissue - ewwww).
It didn't seem too bad to me so I was expecting a dose of antibiotics and to go home again. The surgeons had other ideas. They said they didn't think it was infected, but that we should stay overnight and have a look in the morning. I rearranged several meetings and a highly anticipated outing for that night. (Thankfully my eldest enjoys the ballet too...)
"Ah well", we said, and upstairs we went, expecting to be sent home the next morning.
The doctors came round and when they opened their mouths to say "you can go home", they must have got confused because "I think we'll take her in for a clean, if that's ok with you" came out instead. Every single person looking after us from that point had their money on us leaving that morning - maybe the surgeon was running the book!
So then we were fasting, and we were due for surgery around 3pm.
Now, due to issues when she had her surgery in 2015 Jacinta has a note on her file that she reacts to morphine and fentanyl. These are both opiates. Morphine does the opposite of sedate her. She's firing on all cylinders after a hit of morphine. Fentanyl makes her inconsolable, not want to be touched, scratch everywhere, pull out wires and tubes. It turns our perfect patient, very cruisy young lady into someone who is having a serious meltdown, for several hours.
This is what happened in 2015. It was observed primarily by me. They apparently gave her some again in ICU this time and the reaction was less severe, but still there. I don't know whether or not they attributed her changes to the drug since they don't know her normally. I do know that when I mentioned it was the fentanyl, nobody seemed particularly interested.
Anyway, when we reached the pre-op area they asked what her 'allergies' were (since she has a red name band) and when I mentioned the issue with fentanyl they said 'we'll be giving her fentanyl today' despite what I said. Sometimes there are issues with drugs that are used, where certain protocols are followed and changing them is complicated, so if they make a call that it needs to happen, I don't kick up a fuss since I'm not a fan of complicating things and inviting human error.
So she went off, it all went well, and then she came back.
Again, super thirsty. Wouldn't eat. Inconsolable, no hugs allowed (except from Daddy while he was there) scratching everywhere. Rubbing her eyes. Pulling at all the leads and her IV drip in her hand.
In the end I had to call the nurse in and request that some of the leads be taken off, since her heart rate was up, her respiration rate was low and these were not even right because she was nowhere near still, and pulling off the leads. I think she had ripped the wires out of the sticky spots and was removing her sats probe as fast as I could put it back on. It was absolutely pointless trying to monitor this, when the stickers and probes were part of the problem.
Thankfully the nurse was willing to take off as many as she could. She had to follow certain monitoring guidelines, but could see it was futile to keep everything on. I pointed out that Jacinta was seriously attempting to remove her IV. She had wanted to keep it in just in case it was needed, but made a judgement call to take it out, finding it was already half out when she did remove it.
Finally, about 7pm Jacinta settled down and had something to eat. The ward doctor had been called and she agreed with the nurse that it was an allergic reaction and it wasn't safe for her to be given it. They gave her oxycodone (a cousin of morphine) and some zyrtec to help her settle and she stayed awake, exhausted but wired, until midnight. Looks like she's not a fan of opiates across the board (she's had zyrtec before).
The doctor started paperwork for Jacinta's reaction to be registered on record as an adverse drug reaction, which means that if anyone tries to prescribe it (which is all totally computer generated now) the computer won't let them. I think several staff couldn't quite believe that she was given it in the first place, and it felt weird to be the one being philosophical about it all.
But it's a bit of a sad fact of hospital life I suppose, one which the staff don't often see. If you as a parent observe something happening with your child, it is rare that someone will take your word for it on the first instance without either ignoring it or questioning it. I usually takes several occurrences of a phenomenon for enough staff to observe it and do something about it. That's par for the course. I was surprised that the staff were treating it so seriously, until I realised that they had seen this and it had happened to them (particularly the nurse who barely left our room) and they had feelings and opinions about it.
I hear it was reported through internal channels. That was mentioned the next day when someone asked if it had been. Again, I was a little surprised it was getting so much attention, when it's no different in my mind from the time she was given a drug that should have been ceased and her BP crashed overnight and she had a MET call, or the times I queried drugs or doses being given and the nurses said 'oops, thanks for that'. It's just part of hospital life. We're a team and if I do my job and you guys do yours, we have the best outcome. Still, I appreciate the attention it was given. This is one of the premier children's hospitals in the world and they do pride themselves on doing things properly.
And they asked us if we wanted to go home.
We said, 'yes!'
What had been beautifully scabbed was now scab-less and weepy. It seemed the edges were moving away from each other rather than closer together. I grabbed my bag and a snack and headed out the door, attempting to arrive soon enough to be out of there and home for school pickup.
Hahahahahahhahhahaaaaaaaa!
Now, we've done this before, twice. Once after the first surgery when some stitches must have stayed in and got infected. They gave us antibiotics and sent us home. Once during her admission from the second surgery when the end of the wound looked at bit infected. They took her into surgery and did a debridement (where they clean out old dead or yucky tissue - ewwww).
It didn't seem too bad to me so I was expecting a dose of antibiotics and to go home again. The surgeons had other ideas. They said they didn't think it was infected, but that we should stay overnight and have a look in the morning. I rearranged several meetings and a highly anticipated outing for that night. (Thankfully my eldest enjoys the ballet too...)
"Ah well", we said, and upstairs we went, expecting to be sent home the next morning.
The doctors came round and when they opened their mouths to say "you can go home", they must have got confused because "I think we'll take her in for a clean, if that's ok with you" came out instead. Every single person looking after us from that point had their money on us leaving that morning - maybe the surgeon was running the book!
So then we were fasting, and we were due for surgery around 3pm.
Now, due to issues when she had her surgery in 2015 Jacinta has a note on her file that she reacts to morphine and fentanyl. These are both opiates. Morphine does the opposite of sedate her. She's firing on all cylinders after a hit of morphine. Fentanyl makes her inconsolable, not want to be touched, scratch everywhere, pull out wires and tubes. It turns our perfect patient, very cruisy young lady into someone who is having a serious meltdown, for several hours.
This is what happened in 2015. It was observed primarily by me. They apparently gave her some again in ICU this time and the reaction was less severe, but still there. I don't know whether or not they attributed her changes to the drug since they don't know her normally. I do know that when I mentioned it was the fentanyl, nobody seemed particularly interested.
Anyway, when we reached the pre-op area they asked what her 'allergies' were (since she has a red name band) and when I mentioned the issue with fentanyl they said 'we'll be giving her fentanyl today' despite what I said. Sometimes there are issues with drugs that are used, where certain protocols are followed and changing them is complicated, so if they make a call that it needs to happen, I don't kick up a fuss since I'm not a fan of complicating things and inviting human error.
So she went off, it all went well, and then she came back.
Again, super thirsty. Wouldn't eat. Inconsolable, no hugs allowed (except from Daddy while he was there) scratching everywhere. Rubbing her eyes. Pulling at all the leads and her IV drip in her hand.
In the end I had to call the nurse in and request that some of the leads be taken off, since her heart rate was up, her respiration rate was low and these were not even right because she was nowhere near still, and pulling off the leads. I think she had ripped the wires out of the sticky spots and was removing her sats probe as fast as I could put it back on. It was absolutely pointless trying to monitor this, when the stickers and probes were part of the problem.
Thankfully the nurse was willing to take off as many as she could. She had to follow certain monitoring guidelines, but could see it was futile to keep everything on. I pointed out that Jacinta was seriously attempting to remove her IV. She had wanted to keep it in just in case it was needed, but made a judgement call to take it out, finding it was already half out when she did remove it.
Finally, about 7pm Jacinta settled down and had something to eat. The ward doctor had been called and she agreed with the nurse that it was an allergic reaction and it wasn't safe for her to be given it. They gave her oxycodone (a cousin of morphine) and some zyrtec to help her settle and she stayed awake, exhausted but wired, until midnight. Looks like she's not a fan of opiates across the board (she's had zyrtec before).
The doctor started paperwork for Jacinta's reaction to be registered on record as an adverse drug reaction, which means that if anyone tries to prescribe it (which is all totally computer generated now) the computer won't let them. I think several staff couldn't quite believe that she was given it in the first place, and it felt weird to be the one being philosophical about it all.
But it's a bit of a sad fact of hospital life I suppose, one which the staff don't often see. If you as a parent observe something happening with your child, it is rare that someone will take your word for it on the first instance without either ignoring it or questioning it. I usually takes several occurrences of a phenomenon for enough staff to observe it and do something about it. That's par for the course. I was surprised that the staff were treating it so seriously, until I realised that they had seen this and it had happened to them (particularly the nurse who barely left our room) and they had feelings and opinions about it.
I hear it was reported through internal channels. That was mentioned the next day when someone asked if it had been. Again, I was a little surprised it was getting so much attention, when it's no different in my mind from the time she was given a drug that should have been ceased and her BP crashed overnight and she had a MET call, or the times I queried drugs or doses being given and the nurses said 'oops, thanks for that'. It's just part of hospital life. We're a team and if I do my job and you guys do yours, we have the best outcome. Still, I appreciate the attention it was given. This is one of the premier children's hospitals in the world and they do pride themselves on doing things properly.
And they asked us if we wanted to go home.
We said, 'yes!'
Sunday, 27 November 2016
Ramping up for Monday
So we got the call on Friday to say that the operation that was in pencil for Monday is now in pen.
I wrote down the instructions, which haven't changed. I mentioned to the List Lady that I was happy to sign the consent form on Monday before she went under and was told, "Gee, youu're relaxed!" Meh, just practical.
Then we had the call from the surgeon - on speakerphone with three girls who were itching to get out of the car and meet their friends at the park - explaining that he won't just go in and snip the membrane, he'll also need to dissect from both sides and widen the dodgy valve to stop the flow from making the membrane build up again. More involved but no more risky, he says.
Bit of trivia: the most common side effect of cardiac surgery is infection. About 30% of cardiac surgery patients require antibiotics as part of recovery. Another major side effect is brain damage. (Awesome) Apparently this is not common, but happens from time to time. I guess when people are stopping your heart and mucking around with it there's a chance the flow might get interrupted somewhere along the line.
So I decided we were going to squeeze as much fun into the next few days as we could, to make Jacinta so sick of fun she'll need a week of lying around in hospital to make up for it.
We started with the Challenge Christmas party. Challenge are an organisation who support the families of children with cancer or blood disorders. They run many fun events throughout the year, on top of the work they do in hospital and out. The Christmas party is amazing. You go to a racecourse and it's basically a free carnival with all the trimmings including food and drink, plus Santa who gives the kids a really cool present.
We were so funned-out by the end of it Jacinta flaked in the car and my husband and I pretty much flaked when we got home. We had planned to go to another festival in the evening but opted for a 'family night in' which is code for 'movie, effort-free dinner and some tasty snacks'.
Today's plan was to go to the Myer Christmas windows - super early in the morning so there are no crowds. Then maybe a play centre. Then we had work to do. Presents for the dance teachers, food for the week's lunches, all the washing in the world to get done. I told the girls that this week they can have gluten (i.e. sandwiches in their lunches) because Jacinta won't be home to miss out or sneak it for herself.
So what actually happened was we all slept in, had the laziest morning we've seen in months, finally got dressed and out the door by about 1pm straight to the play centre. Played for a couple of hours then realised that we'd need to be home before 5pm to get Jacinta fed, showered and into bed for the early start. Shopped for teacher presents, cancelled grocery shopping (there'll be time while she's under, let's face it) and had a quick fish n chips at the playground. Then home, shower and bed.
Now it's an early night, early start, no breakfast (solidarity with the fasting sister) and straight in to the hospital. Can't quite believe it's happening to be honest, it's all been so fast.
This time we'll be trialling a tag team arrangement at the hospital. Really not sure how it'll all go, but I guess we'll see. No-one but me has ever spent a night in hospital with her, but she's not breastfed anymore and it really divides the family in half when we keep reinforcing the idea that Jacinta stays with Mum and the other two go with Dad.
I have my fingers crossed that the old 'pull a temp and crazy heart and resp rate when Mum leaves the room' will not apply - especially since she's been spending one day a week with Dad and her sisters while I've been studying for the past few months.
And although you'd think it would get easier, with so many familiar faces and familiar lingo and routines, it doesn't. I wonder if we're at the worst stage - with Jacinta fully able to hear and understand everything we say and indicating by yes, no and emphatic facial expressions how she feels, yet not able to have a conversation about it. Knowing, at the very least, how much this is all going to hurt, and none of us able to do anything about it other than offer cuddles for comfort, especially when the necessary morphine has her bouncing off the walls.
But, you do what you have to and hopefully this time it will be the last. They say there's no such thing as false hope, only false despair. (Well, I believe that is Raymond Veras' saying, actually.)
I'm running with it!
I wrote down the instructions, which haven't changed. I mentioned to the List Lady that I was happy to sign the consent form on Monday before she went under and was told, "Gee, youu're relaxed!" Meh, just practical.
Then we had the call from the surgeon - on speakerphone with three girls who were itching to get out of the car and meet their friends at the park - explaining that he won't just go in and snip the membrane, he'll also need to dissect from both sides and widen the dodgy valve to stop the flow from making the membrane build up again. More involved but no more risky, he says.
Bit of trivia: the most common side effect of cardiac surgery is infection. About 30% of cardiac surgery patients require antibiotics as part of recovery. Another major side effect is brain damage. (Awesome) Apparently this is not common, but happens from time to time. I guess when people are stopping your heart and mucking around with it there's a chance the flow might get interrupted somewhere along the line.
So I decided we were going to squeeze as much fun into the next few days as we could, to make Jacinta so sick of fun she'll need a week of lying around in hospital to make up for it.
 |
| Who's ready for some FUN? |
We started with the Challenge Christmas party. Challenge are an organisation who support the families of children with cancer or blood disorders. They run many fun events throughout the year, on top of the work they do in hospital and out. The Christmas party is amazing. You go to a racecourse and it's basically a free carnival with all the trimmings including food and drink, plus Santa who gives the kids a really cool present.
 |
| Would you believe I forgot to get a photo with Santa? (To be honest, she enjoyed the slide more...) |
Today's plan was to go to the Myer Christmas windows - super early in the morning so there are no crowds. Then maybe a play centre. Then we had work to do. Presents for the dance teachers, food for the week's lunches, all the washing in the world to get done. I told the girls that this week they can have gluten (i.e. sandwiches in their lunches) because Jacinta won't be home to miss out or sneak it for herself.
So what actually happened was we all slept in, had the laziest morning we've seen in months, finally got dressed and out the door by about 1pm straight to the play centre. Played for a couple of hours then realised that we'd need to be home before 5pm to get Jacinta fed, showered and into bed for the early start. Shopped for teacher presents, cancelled grocery shopping (there'll be time while she's under, let's face it) and had a quick fish n chips at the playground. Then home, shower and bed.
Now it's an early night, early start, no breakfast (solidarity with the fasting sister) and straight in to the hospital. Can't quite believe it's happening to be honest, it's all been so fast.
This time we'll be trialling a tag team arrangement at the hospital. Really not sure how it'll all go, but I guess we'll see. No-one but me has ever spent a night in hospital with her, but she's not breastfed anymore and it really divides the family in half when we keep reinforcing the idea that Jacinta stays with Mum and the other two go with Dad.
I have my fingers crossed that the old 'pull a temp and crazy heart and resp rate when Mum leaves the room' will not apply - especially since she's been spending one day a week with Dad and her sisters while I've been studying for the past few months.
And although you'd think it would get easier, with so many familiar faces and familiar lingo and routines, it doesn't. I wonder if we're at the worst stage - with Jacinta fully able to hear and understand everything we say and indicating by yes, no and emphatic facial expressions how she feels, yet not able to have a conversation about it. Knowing, at the very least, how much this is all going to hurt, and none of us able to do anything about it other than offer cuddles for comfort, especially when the necessary morphine has her bouncing off the walls.
But, you do what you have to and hopefully this time it will be the last. They say there's no such thing as false hope, only false despair. (Well, I believe that is Raymond Veras' saying, actually.)
I'm running with it!
 |
| And there's even a rainbow...(no unicorn though) |
Monday, 21 November 2016
It's all going on!
Today was one of those days when you leave to drop the kids at school and don't make it home again until after you've picked them up at the end of the day.
Three appointments - I'd like o say back to back, but there was a fair bit of travelling time in between them.
We're all about the heart surgery right now because we're expecting a call any day to say that it's going to be tomorrow, so of course none of these appointments had anything at all to do with heart surgery.
The chiropractor did some moves to help residual fluid drain out of her teeny tiny eustachian tubes because they're still chock-a-block full of fluid.
The Oncologist said there's no haematological reason for her tiredness and thinks it's worth considering sleep apnoea - suggested we monitor her sats while she's in hospital after the heart. Thought about her low lymphocytes and we wondered if it's worth doing anything about immunity - such as seeing an immunologist re immunoglobulins or vaccinating which might be useless at this stage - then it all got too complicated with the high incidence of low lymphocytes in Trisomy 21 cases and the incomplete thymus, so we decided to leave it til next time, when we see our usual doctor who's back from maternity leave. Effective handball there.
The nicest part of the day was at the hearing clinic. She is going to get a fabric headband which has a device inside for sending the sounds in her environment directly to the inner ear via bone conduction.
The person we saw had an old device there which we tried, and Jacinta was transfixed when it was used. We couldn't leave it there, so had to take it away and she was instantly pointing at her ears, to ask us to put it back. She was emphatic in her 'yes' when I asked if she wanted one.
So if we don't get the call for surgery before next Monday she'll have a fitting appointment for her new hearing device - and then it'll be game on for speech development and we can see what she's really capable of. Things are getting exciting!
And meanwhile we try not to think too much about the heart. She knows and understands and doesn't want to talk about it.
Last week was the kindergarten AGM, where all the new parents arrive and vote on the next year's committee. She was reacquainted with the educators and it was lovely to be talking with them about her needs for next year. It's all really becoming real. She's been home with me for so long and it's been just us for so much of it, it's been hard to imagine life beyond this year, but it's starting to take shape. Today I booked two appointments for next year. Need a new diary!
Many things going on right now, and I can't wait til Christmas because I am living under the delusion that things will settle down by then. (As if!)
Three appointments - I'd like o say back to back, but there was a fair bit of travelling time in between them.
We're all about the heart surgery right now because we're expecting a call any day to say that it's going to be tomorrow, so of course none of these appointments had anything at all to do with heart surgery.
The chiropractor did some moves to help residual fluid drain out of her teeny tiny eustachian tubes because they're still chock-a-block full of fluid.
The Oncologist said there's no haematological reason for her tiredness and thinks it's worth considering sleep apnoea - suggested we monitor her sats while she's in hospital after the heart. Thought about her low lymphocytes and we wondered if it's worth doing anything about immunity - such as seeing an immunologist re immunoglobulins or vaccinating which might be useless at this stage - then it all got too complicated with the high incidence of low lymphocytes in Trisomy 21 cases and the incomplete thymus, so we decided to leave it til next time, when we see our usual doctor who's back from maternity leave. Effective handball there.
The nicest part of the day was at the hearing clinic. She is going to get a fabric headband which has a device inside for sending the sounds in her environment directly to the inner ear via bone conduction.
The person we saw had an old device there which we tried, and Jacinta was transfixed when it was used. We couldn't leave it there, so had to take it away and she was instantly pointing at her ears, to ask us to put it back. She was emphatic in her 'yes' when I asked if she wanted one.
So if we don't get the call for surgery before next Monday she'll have a fitting appointment for her new hearing device - and then it'll be game on for speech development and we can see what she's really capable of. Things are getting exciting!
And meanwhile we try not to think too much about the heart. She knows and understands and doesn't want to talk about it.
Last week was the kindergarten AGM, where all the new parents arrive and vote on the next year's committee. She was reacquainted with the educators and it was lovely to be talking with them about her needs for next year. It's all really becoming real. She's been home with me for so long and it's been just us for so much of it, it's been hard to imagine life beyond this year, but it's starting to take shape. Today I booked two appointments for next year. Need a new diary!
Many things going on right now, and I can't wait til Christmas because I am living under the delusion that things will settle down by then. (As if!)
Wednesday, 26 October 2016
Forgot to touch wood!
Hey all,
A month or two ago I realised that for the first time in Jacinta's life she'd managed to clock up twelve straight months out of hospital. That's saying something when you're approaching 4 years of age!
Now, I'm not your throw-salt-over-your-shoulder, don't-step-on-a-crack-while-walking-under-a-black-ladder-on-Friday-the-thirteenth kind of person but as I say, I should have touched wood - but I forgot, coz I never do.
I actually thought I was going to be telling another knock knock joke - you remember the one where it's Luke - Luke Aemia, since Jacinta has been rather more tired lately and there have been some petechiae and a nose that wouldn't stop bleeding, but on the very same afternoon as I was calling the Oncologist to find out the blood results, the Cardiologist was trying to call me to tell me Jacinta needs another round of heart surgery.
The upshot is, bloods are nothing to worry about, but the membrane growing across her left ventricular outflow tract is likely to cause a problem if it's left there, so they want to take it out.
Should be a short procedure, but with all the scar tissue it'll take some time like it did last time. They have to cut through very carefully so they take....their.....time. Not much time on bypass though, which is good.
And because things are quiet at the moment, they want to do it in November - which is a couple of weeks away!!
Suddenly we've gone from no hospital on the horizon and everything mostly normal (bar the tiredness etc) to a pre-admission appointment in a couple of weeks and surgery any time after that. We've never had such a short lead time, but I'm grateful for it. Hanging, waiting on tenterhooks for a year is something I'd rather not repeat. I like to write things in pen!
So I'll update you as we need to and as it happens. See you in a couple of weeks!
A month or two ago I realised that for the first time in Jacinta's life she'd managed to clock up twelve straight months out of hospital. That's saying something when you're approaching 4 years of age!
Now, I'm not your throw-salt-over-your-shoulder, don't-step-on-a-crack-while-walking-under-a-black-ladder-on-Friday-the-thirteenth kind of person but as I say, I should have touched wood - but I forgot, coz I never do.
I actually thought I was going to be telling another knock knock joke - you remember the one where it's Luke - Luke Aemia, since Jacinta has been rather more tired lately and there have been some petechiae and a nose that wouldn't stop bleeding, but on the very same afternoon as I was calling the Oncologist to find out the blood results, the Cardiologist was trying to call me to tell me Jacinta needs another round of heart surgery.
The upshot is, bloods are nothing to worry about, but the membrane growing across her left ventricular outflow tract is likely to cause a problem if it's left there, so they want to take it out.
Should be a short procedure, but with all the scar tissue it'll take some time like it did last time. They have to cut through very carefully so they take....their.....time. Not much time on bypass though, which is good.
And because things are quiet at the moment, they want to do it in November - which is a couple of weeks away!!
Suddenly we've gone from no hospital on the horizon and everything mostly normal (bar the tiredness etc) to a pre-admission appointment in a couple of weeks and surgery any time after that. We've never had such a short lead time, but I'm grateful for it. Hanging, waiting on tenterhooks for a year is something I'd rather not repeat. I like to write things in pen!
So I'll update you as we need to and as it happens. See you in a couple of weeks!
Wednesday, 5 October 2016
Houdini
Hi all, yesterday I realised something and I just wanted to share.
For a couple of weeks now, every time we go somewhere, I'd look back and see Jacinta with her arms out of her seatbelt. I'd tell her to put her arms back in, and she would, then she'd get a thumbs up and we'd be on our way again. This was not unchartered territory since each of my daughters had tried it on for a bit and then given up. After a little while instead of her stopping it, she started refusing to put her arms back in, so I'd go round and do it for her as I had already said I would if she didn't comply.
Then it got so as her arms would be back out again as soon as I'd returned to my seat and she was trying to unclick the whole thing.
I decided I'd need to go out and find a strap to connect the two shoulder straps - which we seem to call a Houdini strap. (In this part of the world we have two shoulder straps connected to another strap at the crotch.) But I remembered something that I'd noticed recently and not had the chance to correct and thought it might make it harder to get out.
I'd noticed on clicking her in that she had recently grown beyond the height of her shoulder straps. There's usually no mucking around where the car's concerned, either we're getting straight in or straight out, so spending 5-10 minutes adjusting the straps hadn't crossed my mind at the key moment.
I moved the straps to the next slot. The next time she was in the car I looked back and she was staying put, not even trying to get out. Every ride since her straps have remained in place. I asked her if the straps were hurting her before. She said 'yes'. Awesome.
Now I'd be lying if I didn't feel a little silly saying that after two previous children I only just worked out that it might be the problem.
Mother of the Year! Big clap for me! Better late than never....
So be aware! Shift those shoulder straps! (I'm sure most of you are right on it anyway.)
For a couple of weeks now, every time we go somewhere, I'd look back and see Jacinta with her arms out of her seatbelt. I'd tell her to put her arms back in, and she would, then she'd get a thumbs up and we'd be on our way again. This was not unchartered territory since each of my daughters had tried it on for a bit and then given up. After a little while instead of her stopping it, she started refusing to put her arms back in, so I'd go round and do it for her as I had already said I would if she didn't comply.
Then it got so as her arms would be back out again as soon as I'd returned to my seat and she was trying to unclick the whole thing.
I decided I'd need to go out and find a strap to connect the two shoulder straps - which we seem to call a Houdini strap. (In this part of the world we have two shoulder straps connected to another strap at the crotch.) But I remembered something that I'd noticed recently and not had the chance to correct and thought it might make it harder to get out.
I'd noticed on clicking her in that she had recently grown beyond the height of her shoulder straps. There's usually no mucking around where the car's concerned, either we're getting straight in or straight out, so spending 5-10 minutes adjusting the straps hadn't crossed my mind at the key moment.
I moved the straps to the next slot. The next time she was in the car I looked back and she was staying put, not even trying to get out. Every ride since her straps have remained in place. I asked her if the straps were hurting her before. She said 'yes'. Awesome.
Now I'd be lying if I didn't feel a little silly saying that after two previous children I only just worked out that it might be the problem.
So be aware! Shift those shoulder straps! (I'm sure most of you are right on it anyway.)
Monday, 3 October 2016
October just turned up - and it brought friends!
Well, you know me and Trisomy 21 awareness - lackadaisical bordering on cynically negligent. I was going to let this one go through to the keeper, having blogged at least twice this financial year....
But then things happened. They started a review of Medicare and someone suggested putting non-invasive prenatal screening (NIPS) for chromosome differences on the schedule, Sally Phillips (the actress we all know as 'Shazza who says f*ck a lot' from Bridget Jones' Diary and from the classic Australian comedy "Boytown" - I don't watch Miranda but apparently she's in that too) made a documentary about Down Syndrome and dared to give it to a UK TV station for broadcast next week, and the ABC ran an episode of Australian Story about a young adult couple with Trisomy 21 who want marriage and babies.
The T21 internet has pretty much broken. Seriously, I can't keep track of all the Facebook posts, threads, comments and which groups they're all in. I've been added to two more (very cool) groups this week!
And why? October is Trisomy 21 (OK, Down Syndrome) Awareness Month. And it's on for young and old.
And what gets my goat the most? It's not the parents of the adults who want marriage and babies, because frankly that's their business and I have the same aspirations as they started with and my child is all of 3 going on 20, so when I get my crystal ball I'm entitled to a public opinion.
It's also not so much that someone wants to add the NIPS test to the Medical schedule. This is a useful tool for those who are informed. The issue is that VERY FEW PEOPLE ARE ACTUALLY INFORMED. More on that later.
What really gets my goat is the reaction Sally Phillips' documentary (which hasn't even aired yet) has received from the British press so far. All of a sudden she's being labelled 'unhelpful' in an article entitled
Now Jane Fisher is from a group called Antenatal Results and Choices. This group is buddies with several manufacturers of the NIPS tests and has been accused of being anything but supportive of at least one person who wasn't keen to terminate her pregnancy. Her job is not to help people through their pregnancies to their natural conclusion.
She claims that it is unhelpful to make a parent's decision more complicated, when deciding whether their foetus is going to live or die. More complicated?? A life or death decision should be less complicated?? Are we a little production line, where a parent comes in after a test, is told the right thing to do and coerced into doing it, therefore making it easier on them somehow? Who decided that was the ethical thing to do?
Next she claims that it risks offering the suggestion to those who have terminated that they have made the wrong decision. Now please don't think I am meaning to be at all callous about this, because I feel absolute heartbreak for those people. I do sometimes wonder when my little girl runs around charming the pants off people whether or not there are those around who have terminated a pregnancy and how that makes them feel. Maybe they look at her and assume it won't be fun and games forever, or maybe they feel a guilt they find hard to live with. I don't know.
But that is NOT our responsibility.
That is their responsibility. Sometimes we make bad decisions and we then have to live with those decisions - unless we were born in the 90s or later, in which case our parents will bail us out or we'll blame the establishment. (OK, sorry for the millennial-bashing! Bad girl! Hand-slap delivered.)
Why must we continually tiptoe around people who made bad decisions and are not taking responsibility for them??!!
Sally Phillips is highlighting an issue which affects expectant parents all over the Western world. The medical establishment seems to have the idea that they should inform parents of all the risks in everything and downplay the highlights to avoid giving false hope, presumably to avoid being sued.
But this has gone too far, to the point where my husband was berated by a doctor well after Jacinta was born (this was a routine GP visit for his own health) for not terminating the pregnancy. This served absolutely no purpose other than allowing the doctor to voice his opinion and showed no agenda other than eugenics. The logic was 'she has Trisomy 21, why wasn't she aborted?', which is discrimination at best and eugenics if we're really confronting it. No-one was going to sue him for saying absolutely nothing and carrying on with his job of diagnosing and treating my husband.
It's no news that parents all over Australia are given a possible, probable or confirmed diagnosis and then pressured to terminate - often repeatedly and sometimes even very late into the pregnancy.
Parents trust their doctors, assume they would be told if there was more information to be had and consider the information they have been given very carefully and consulting their conscience.
The information given to expectant parents is often poor, outdated and negatively biased. It leads to very high termination percentages, at a time when Trisomy 21 has never looked so good. It is the aim of many parents both in the UK and Australia to get the right, unbiased information out there. I still say that a google of regretful parents with children with T21 brings up nothing but regret for termination and one newspaper article that I hope the child of that mother never reads.
Yet the advice given to pregnant parents is that the regret is on the keeping side and the relief is on the termination side. That's not how it looks on the internet. I know it's not how it looks on the keeping side. I don't know anyone who has terminated and commented about it, but the one comment I've seen was a character in Eddie Perfect's play The Beast, agonising over a decision made to terminate in the past.
I chose not to have genetic testing with any of my children. I wouldn't kill a puppy so I wouldn't kill a foetus. That's my choice. I didn't want to have an agonising wait while I sat on a possible diagnosis for 6 months. Fear of the unknown is bad enough when you have nothing to worry about in pregnancy, let alone when you do. I was lucky to have a heads up a couple of weeks before, not enough to seriously worry about it but enough not to be completely shocked when Jacinta was born.
If I ever had another baby, I would probably choose the NIPS test. I feel informed enough now that the test would be useful information about what to expect, rather than worrying me about a big unknown.
I am informed. I would choose to give birth to another child with Trisomy 21 if another was conceived. This is not a religious decision, it's a rational decision based on my experience so far.
If up to 90% of parents are choosing to terminate I can only assume either that they are extremely selfish (preferring to kill a life form rather than be inconvenienced, as you would a fly) or grossly misinformed. I am pretty sure (in most cases) that it's the latter.
If these NIPS are to become the norm, then so must become being properly informed before you take the test - or at least upon a positive result. Then parents can be empowered, not kept in the dark. They can know that they will be terminating a life that chances are will be much more like your average Joe than not. It might not be as easy and there might be a few more sacrifices, but don't they say that life without pain has no meaning?
And we can't keep tiptoeing around those who have already chosen. We can make those advising them accountable and more responsible in the future for those who receive a diagnosis.
Personally I would love to see a positive diagnosis delivered by a person with Trisomy 21 who knows the stats and can candidly answer questions about their life. The world probably isn't ready for this, but I know there are people out there who are up to the task. Let them speak for themselves.
And let the parents fully understand, and make a real choice, one they can live with.
But then things happened. They started a review of Medicare and someone suggested putting non-invasive prenatal screening (NIPS) for chromosome differences on the schedule, Sally Phillips (the actress we all know as 'Shazza who says f*ck a lot' from Bridget Jones' Diary and from the classic Australian comedy "Boytown" - I don't watch Miranda but apparently she's in that too) made a documentary about Down Syndrome and dared to give it to a UK TV station for broadcast next week, and the ABC ran an episode of Australian Story about a young adult couple with Trisomy 21 who want marriage and babies.
The T21 internet has pretty much broken. Seriously, I can't keep track of all the Facebook posts, threads, comments and which groups they're all in. I've been added to two more (very cool) groups this week!
And why? October is Trisomy 21 (OK, Down Syndrome) Awareness Month. And it's on for young and old.
And what gets my goat the most? It's not the parents of the adults who want marriage and babies, because frankly that's their business and I have the same aspirations as they started with and my child is all of 3 going on 20, so when I get my crystal ball I'm entitled to a public opinion.
It's also not so much that someone wants to add the NIPS test to the Medical schedule. This is a useful tool for those who are informed. The issue is that VERY FEW PEOPLE ARE ACTUALLY INFORMED. More on that later.
What really gets my goat is the reaction Sally Phillips' documentary (which hasn't even aired yet) has received from the British press so far. All of a sudden she's being labelled 'unhelpful' in an article entitled
Sally Phillips’s film on Down’s is ‘unhelpful’ for families, warns antenatal specialist.
Now Jane Fisher is from a group called Antenatal Results and Choices. This group is buddies with several manufacturers of the NIPS tests and has been accused of being anything but supportive of at least one person who wasn't keen to terminate her pregnancy. Her job is not to help people through their pregnancies to their natural conclusion.
She claims that it is unhelpful to make a parent's decision more complicated, when deciding whether their foetus is going to live or die. More complicated?? A life or death decision should be less complicated?? Are we a little production line, where a parent comes in after a test, is told the right thing to do and coerced into doing it, therefore making it easier on them somehow? Who decided that was the ethical thing to do?
Next she claims that it risks offering the suggestion to those who have terminated that they have made the wrong decision. Now please don't think I am meaning to be at all callous about this, because I feel absolute heartbreak for those people. I do sometimes wonder when my little girl runs around charming the pants off people whether or not there are those around who have terminated a pregnancy and how that makes them feel. Maybe they look at her and assume it won't be fun and games forever, or maybe they feel a guilt they find hard to live with. I don't know.
But that is NOT our responsibility.
That is their responsibility. Sometimes we make bad decisions and we then have to live with those decisions - unless we were born in the 90s or later, in which case our parents will bail us out or we'll blame the establishment. (OK, sorry for the millennial-bashing! Bad girl! Hand-slap delivered.)
Why must we continually tiptoe around people who made bad decisions and are not taking responsibility for them??!!
Sally Phillips is highlighting an issue which affects expectant parents all over the Western world. The medical establishment seems to have the idea that they should inform parents of all the risks in everything and downplay the highlights to avoid giving false hope, presumably to avoid being sued.
But this has gone too far, to the point where my husband was berated by a doctor well after Jacinta was born (this was a routine GP visit for his own health) for not terminating the pregnancy. This served absolutely no purpose other than allowing the doctor to voice his opinion and showed no agenda other than eugenics. The logic was 'she has Trisomy 21, why wasn't she aborted?', which is discrimination at best and eugenics if we're really confronting it. No-one was going to sue him for saying absolutely nothing and carrying on with his job of diagnosing and treating my husband.
It's no news that parents all over Australia are given a possible, probable or confirmed diagnosis and then pressured to terminate - often repeatedly and sometimes even very late into the pregnancy.
Parents trust their doctors, assume they would be told if there was more information to be had and consider the information they have been given very carefully and consulting their conscience.
The information given to expectant parents is often poor, outdated and negatively biased. It leads to very high termination percentages, at a time when Trisomy 21 has never looked so good. It is the aim of many parents both in the UK and Australia to get the right, unbiased information out there. I still say that a google of regretful parents with children with T21 brings up nothing but regret for termination and one newspaper article that I hope the child of that mother never reads.
Yet the advice given to pregnant parents is that the regret is on the keeping side and the relief is on the termination side. That's not how it looks on the internet. I know it's not how it looks on the keeping side. I don't know anyone who has terminated and commented about it, but the one comment I've seen was a character in Eddie Perfect's play The Beast, agonising over a decision made to terminate in the past.
I chose not to have genetic testing with any of my children. I wouldn't kill a puppy so I wouldn't kill a foetus. That's my choice. I didn't want to have an agonising wait while I sat on a possible diagnosis for 6 months. Fear of the unknown is bad enough when you have nothing to worry about in pregnancy, let alone when you do. I was lucky to have a heads up a couple of weeks before, not enough to seriously worry about it but enough not to be completely shocked when Jacinta was born.
If I ever had another baby, I would probably choose the NIPS test. I feel informed enough now that the test would be useful information about what to expect, rather than worrying me about a big unknown.
I am informed. I would choose to give birth to another child with Trisomy 21 if another was conceived. This is not a religious decision, it's a rational decision based on my experience so far.
If up to 90% of parents are choosing to terminate I can only assume either that they are extremely selfish (preferring to kill a life form rather than be inconvenienced, as you would a fly) or grossly misinformed. I am pretty sure (in most cases) that it's the latter.
If these NIPS are to become the norm, then so must become being properly informed before you take the test - or at least upon a positive result. Then parents can be empowered, not kept in the dark. They can know that they will be terminating a life that chances are will be much more like your average Joe than not. It might not be as easy and there might be a few more sacrifices, but don't they say that life without pain has no meaning?
And we can't keep tiptoeing around those who have already chosen. We can make those advising them accountable and more responsible in the future for those who receive a diagnosis.
Personally I would love to see a positive diagnosis delivered by a person with Trisomy 21 who knows the stats and can candidly answer questions about their life. The world probably isn't ready for this, but I know there are people out there who are up to the task. Let them speak for themselves.
And let the parents fully understand, and make a real choice, one they can live with.
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