didn't manage to update her blog yesterday - sorry all (interestingly, the word "blog" has a little red line underneath it, like I've mis-spelled it. What sort of blog doesn't recognise the word "blog"?)
In case you're wondering (and I presume you are if you've managed to keep going with my commentary) yesterday was utterly crap. Utterly, udderly cow crap. Until me very last visit of the day, every time I poked my head around the curtain she looked like :(
Things started well - she was pleased to be getting all her various tubes out. Unfortunately 1) they didn't cover her analgesia needs when they took out the epidural; 2) her rectal tube was stuck. Hence ":("
By the end of the day her PCA button was getting worn out, and I don't think she ever let things go beyond the lockout period. She made friends with the Pain Team. Things were so grim that she didn't want any little visitors yesterday. The little one wasn't happy but we managed to distract her just enough. Word is that she has managed to brave a whole shower this am, so clearly things are on the up and we'll get going once, well, you guys let me go.
1# husband
ps - they say we won the cricket last night, but I suspect they were accdentally showing a replay from a decade ago.
Friday 31 May 2013
Thursday 30 May 2013
no cricket puns - I'm out of ideas...
... just like the NZ top-order batsmen.
Hmmm.
The naso-gastric tube has made a difference, and they blocked it off in the afternoon without too many problems. She's started drinking again with minimal fuss.
This afternoon we took the plunge and took both girls to see her. Almost exactly as we feared the little one didn't cope well when we left. Plaintive cries of "mama! Mama!" could be heard all down the corridor. Horrible to hear. Fortunately she settled once we got home, but it must be said that she's getting a bit short-tempered with nana. She went to bed ok and hopefully she won't be missing mum too much tomorrow.
The big sister seems to be coping up ok, but I worry that we're pushing a bit too much expectation of maturity on her. I think she's playing up form time to time, usually when little sister is trying to hold our attention. I need to give her some more time for herself. She is keen on doing some more running, so that'll be one thing.
Overall, things are moving s-l-o-w-l-y. Optimistically she might get home early next week, but I certainly won't be pushing it. By and large she still isn't in the mood for visitors. She can look quite chipper at times, but after any effort whatsoever she looks like she did on day one.
I keep saying that I'm planning on going to work tomorrow, in case it makes it more true.
I'm grateful for the help of friends.
#1 husband
Hmmm.
The naso-gastric tube has made a difference, and they blocked it off in the afternoon without too many problems. She's started drinking again with minimal fuss.
This afternoon we took the plunge and took both girls to see her. Almost exactly as we feared the little one didn't cope well when we left. Plaintive cries of "mama! Mama!" could be heard all down the corridor. Horrible to hear. Fortunately she settled once we got home, but it must be said that she's getting a bit short-tempered with nana. She went to bed ok and hopefully she won't be missing mum too much tomorrow.
The big sister seems to be coping up ok, but I worry that we're pushing a bit too much expectation of maturity on her. I think she's playing up form time to time, usually when little sister is trying to hold our attention. I need to give her some more time for herself. She is keen on doing some more running, so that'll be one thing.
Overall, things are moving s-l-o-w-l-y. Optimistically she might get home early next week, but I certainly won't be pushing it. By and large she still isn't in the mood for visitors. She can look quite chipper at times, but after any effort whatsoever she looks like she did on day one.
I keep saying that I'm planning on going to work tomorrow, in case it makes it more true.
I'm grateful for the help of friends.
#1 husband
Wednesday 29 May 2013
her surgery is a bit like watching a NZ cricket test because....
1) it's three days later and she's still suffering from quite nasty nausea and vomiting
Rough night.
Lots of vomiting. When I was down last night they were adding more anti-emetic, but obviously without my benefit.
At some stage they stuck in a naso-gastric tube, which has helped. It means that there's not too many other places they could stick a tube into her. But still, she's not had much chance to rest so today will be quiet. As I left they were about to give her a bed bath (but not a beyond).
They came around to take her meal order for the next day. Frankly given her options I think I'd need an NG tube too.
I was going to go back to work today but frankly I'm not in the mood to listen to peoples' problems. Maybe tomorrow.
Daycare hand-off wasn't too bad.
#1 Husband
Rough night.
Lots of vomiting. When I was down last night they were adding more anti-emetic, but obviously without my benefit.
At some stage they stuck in a naso-gastric tube, which has helped. It means that there's not too many other places they could stick a tube into her. But still, she's not had much chance to rest so today will be quiet. As I left they were about to give her a bed bath (but not a beyond).
They came around to take her meal order for the next day. Frankly given her options I think I'd need an NG tube too.
I was going to go back to work today but frankly I'm not in the mood to listen to peoples' problems. Maybe tomorrow.
Daycare hand-off wasn't too bad.
#1 Husband
much like any professional cricket game in India....
1) I'm confident she can be fixed
Tough day.
They've managed to get her pain under control, but today she's been tired and nauseous. When we saw her in the afternoon (after the big one had finished school) she'd been up in the chair for a couple of hours but was really feeling it. The nurses wanted her to go for a quick walk before going back to bed but she barely managed three shuffling steps before she had to ease her back. Shame, as it took ages to untangle her tubes so that she was able to get going in the first place (three tubes going in and four going out, not including the stoma itself).
When I went back in after the girls went to sleep she had a troubled look on her face, and was trying to find a bed angle that helped with her nausea. She's needed three (?) changes today, as a result of leaks etc.
They were hoping that she'd only need 5-7 days in hospital, but at this rate of recovery I don't see how this will happen. Hopefully things start getting exponentially better soon.
The other woman in the room is an older woman who has old woman friends who, like teenagers, can spend hours nattering about nothing. Ear plugs were useful.
At the end of June is the Wellington marathon, which I will not be running (I was actually a little grateful for the excuse not to train). However there is the Magic Mile for kids, and big sister is quite intrigued by the thought of doing this. We live near a running track, so I got her to do four laps the other day, with plenty of breaks each lap. Today I was impressed when she managed to run one whole lap essentially non-stop (with minimal paternal encouragement). Mum would dearly love to watch her run this, but given the likely time lines I don't think she'll be able to spend that much time out and away from a toilet.
As I was dreading, little one started pining for mummy tonight. We managed to distract her in the end, but this can't last forever. On the plus side she's still sleeping ok and seemed happy enough at daycare today.
I think I know the style of tap I want for the bathroom.
#1 husband
Tough day.
They've managed to get her pain under control, but today she's been tired and nauseous. When we saw her in the afternoon (after the big one had finished school) she'd been up in the chair for a couple of hours but was really feeling it. The nurses wanted her to go for a quick walk before going back to bed but she barely managed three shuffling steps before she had to ease her back. Shame, as it took ages to untangle her tubes so that she was able to get going in the first place (three tubes going in and four going out, not including the stoma itself).
When I went back in after the girls went to sleep she had a troubled look on her face, and was trying to find a bed angle that helped with her nausea. She's needed three (?) changes today, as a result of leaks etc.
They were hoping that she'd only need 5-7 days in hospital, but at this rate of recovery I don't see how this will happen. Hopefully things start getting exponentially better soon.
The other woman in the room is an older woman who has old woman friends who, like teenagers, can spend hours nattering about nothing. Ear plugs were useful.
At the end of June is the Wellington marathon, which I will not be running (I was actually a little grateful for the excuse not to train). However there is the Magic Mile for kids, and big sister is quite intrigued by the thought of doing this. We live near a running track, so I got her to do four laps the other day, with plenty of breaks each lap. Today I was impressed when she managed to run one whole lap essentially non-stop (with minimal paternal encouragement). Mum would dearly love to watch her run this, but given the likely time lines I don't think she'll be able to spend that much time out and away from a toilet.
As I was dreading, little one started pining for mummy tonight. We managed to distract her in the end, but this can't last forever. On the plus side she's still sleeping ok and seemed happy enough at daycare today.
I think I know the style of tap I want for the bathroom.
#1 husband
Tuesday 28 May 2013
much like any NZ innings....
1) the whole thing yesterday took about 5 hours
2) today she could be out in the blink of an eye
3) her middle can't cope with any sort of pressure
We've worked out why this still feels quite surreal. For most people, an operation of this magnitude comes after much suffering or with immediate fear. So someone with ulcerative colitis who has the same operation will get relief after years of pain. Someone who has a hemicolectomy for a big tumour is grateful that the damn thing is out of them. A hip replacement ends years of pain and can return mobility and freedom.
But here, all was pretty ok. Oh, sure, there was a small tumour, but that was taken care of during the colonoscopy. No-one would chop off an arm if the mole I excised from the back of the hand turned out to be a melanoma with clear margins*.
This then was a prophylactic procedure, to try to eliminate the risk of turning up one day with liver metastases from that one polyp that got missed that one time. Like the double mastectomy for someone with the BRCA gene (a la Angelina Jolie). The key difference here though is the loss of function, not just form (although I'm not trying to downplay the effect that can have).
The brutish ward staff were true to their word, and forced her out of bed this morning - barely 18 hours after the final stitch! By the time Nana went to see her she was exhausted after her 45 mins hard sitting in the chair. Presumeably they'll have her doing sit-ups by Thursday. She been very good with her DVT exercises, though.
I took the older one in to see her after school - we figured it would be too hard for the wee one, as she'd want to cuddle and crawl all over mum. And we worried she'd be too distressed when we left. Elder was quite taken by all the pumps and tubes. I pointed out mum's central line (in the neck).
The stoma has turned out to be a touch fiddly. They seem to have it working ok for now, but the word is that they may need to do the reversal procedure in a couple of weeks, not eight as originally planned. Now, that eight weeks is important to let the join at the end to heal enough to cope with its new job, so reducing the healing time will put her at risk of leakage. However there was the chance that they wouldn't be able to form the stoma in the first place, so I guess two weeks of healing is better than none.
I can't decide on the style of tap I want for the new bathroom vanity.
#1 Husband
* if any mole that I excised turned out to be a melanoma, that person would need to go to Plastics for a much wider excision margin, even if my sample looked clear.
2) today she could be out in the blink of an eye
3) her middle can't cope with any sort of pressure
We've worked out why this still feels quite surreal. For most people, an operation of this magnitude comes after much suffering or with immediate fear. So someone with ulcerative colitis who has the same operation will get relief after years of pain. Someone who has a hemicolectomy for a big tumour is grateful that the damn thing is out of them. A hip replacement ends years of pain and can return mobility and freedom.
But here, all was pretty ok. Oh, sure, there was a small tumour, but that was taken care of during the colonoscopy. No-one would chop off an arm if the mole I excised from the back of the hand turned out to be a melanoma with clear margins*.
This then was a prophylactic procedure, to try to eliminate the risk of turning up one day with liver metastases from that one polyp that got missed that one time. Like the double mastectomy for someone with the BRCA gene (a la Angelina Jolie). The key difference here though is the loss of function, not just form (although I'm not trying to downplay the effect that can have).
The brutish ward staff were true to their word, and forced her out of bed this morning - barely 18 hours after the final stitch! By the time Nana went to see her she was exhausted after her 45 mins hard sitting in the chair. Presumeably they'll have her doing sit-ups by Thursday. She been very good with her DVT exercises, though.
I took the older one in to see her after school - we figured it would be too hard for the wee one, as she'd want to cuddle and crawl all over mum. And we worried she'd be too distressed when we left. Elder was quite taken by all the pumps and tubes. I pointed out mum's central line (in the neck).
The stoma has turned out to be a touch fiddly. They seem to have it working ok for now, but the word is that they may need to do the reversal procedure in a couple of weeks, not eight as originally planned. Now, that eight weeks is important to let the join at the end to heal enough to cope with its new job, so reducing the healing time will put her at risk of leakage. However there was the chance that they wouldn't be able to form the stoma in the first place, so I guess two weeks of healing is better than none.
I can't decide on the style of tap I want for the new bathroom vanity.
#1 Husband
* if any mole that I excised turned out to be a melanoma, that person would need to go to Plastics for a much wider excision margin, even if my sample looked clear.
Monday 27 May 2013
she's a bit like the NZ bowling attack because...
1) she looks knackered
2) she was leaking runs overnight
still tired this am, but looking much more alert. Ward round came and went with minimal fuss. It looks like they'll need to re-fit the stoma bag, but she has yet to see the stoma nurses who will no doubt sort things out.
They say that the histology will take 5-7 days so we'll just need to be patient. They've suggested that she start drinking sports drinks for their potassium (no doubt from the fine potassium mines of Khazakhstan), but I think I'll just buy her a banana
In local news the wee one slept poorly, both in her cot and also with me. I know it's just viral, but she's been complaining about her ears enough that I decided to take her to the After Hour's. Naturally the sore ear was full of wax (which could be the cause of her pain I guess). Now that we're back home she's perked up a little and is reading books with the nanny.
Right - off to the physio for my back of mystery
#1 husband
2) she was leaking runs overnight
still tired this am, but looking much more alert. Ward round came and went with minimal fuss. It looks like they'll need to re-fit the stoma bag, but she has yet to see the stoma nurses who will no doubt sort things out.
They say that the histology will take 5-7 days so we'll just need to be patient. They've suggested that she start drinking sports drinks for their potassium (no doubt from the fine potassium mines of Khazakhstan), but I think I'll just buy her a banana
In local news the wee one slept poorly, both in her cot and also with me. I know it's just viral, but she's been complaining about her ears enough that I decided to take her to the After Hour's. Naturally the sore ear was full of wax (which could be the cause of her pain I guess). Now that we're back home she's perked up a little and is reading books with the nanny.
Right - off to the physio for my back of mystery
#1 husband
She's NOT like the NZ cricket team because...
1) she's not choking
2) she's trying to move her feet
3) she'll soon have lots of runs
Ok - we can all breathe again. As you can imagine she's tired and a bit sore, but she's on the ward and almost 100% whole. She wasn't up for much conversation, but that's fine for now.
I'll try to be there at tomorrow's ward round, but I was never very good at turning up for 7:30 ward rounds, even when I was working there.
Tonight I get to sleep in the middle of the bed. Hooray!
#1 husband
2) she's trying to move her feet
3) she'll soon have lots of runs
Ok - we can all breathe again. As you can imagine she's tired and a bit sore, but she's on the ward and almost 100% whole. She wasn't up for much conversation, but that's fine for now.
I'll try to be there at tomorrow's ward round, but I was never very good at turning up for 7:30 ward rounds, even when I was working there.
Tonight I get to sleep in the middle of the bed. Hooray!
#1 husband
She's a bit like the NZ cricket team because...
1) she's out
2) she's a bit gutless
3) she's not very good at cricket
Her surgeon gave me a call when they were done - that was very nice of him. From about the third hour on I was pacing a little bit.
I went down to the ward soon afterwards, but this was a bit optimistic. She's now been in recovery for close to four hours but I just got a call from the ward informing me that's she on her way up (unlike the NZ cricket team).
The kids went to bed with minimal fuss - we'll see how we do once they figure out that mummy's away for a while (especially the wee one).
Right - I'm off to see if she remembers me.
#1 husband
2) she's a bit gutless
3) she's not very good at cricket
Her surgeon gave me a call when they were done - that was very nice of him. From about the third hour on I was pacing a little bit.
I went down to the ward soon afterwards, but this was a bit optimistic. She's now been in recovery for close to four hours but I just got a call from the ward informing me that's she on her way up (unlike the NZ cricket team).
The kids went to bed with minimal fuss - we'll see how we do once they figure out that mummy's away for a while (especially the wee one).
Right - I'm off to see if she remembers me.
#1 husband
Sunday 26 May 2013
It ain't me, babe
hello, all you bloggists and bloggees in cyborgspace. It's me, the husband, and I think this is the first time I've done this. I'm not even sure this is going to end up in the right place.
Anyway, we trotted off to the hospital at 7:20 and announced ourselves. Then we had a wee wait in the Surg Admissions unit (they really need to change the channel when the infomercials start) before she got the final chats with the Anaesthetist, Surgical Reg, and Nurse. One sexy gown change later and we were off. Until the door leading towards the theatres, where I was given the polite eye (you know, when you're invited to p*ss off). For a brief second I though about going all National List MP on them and asking it they knew who I was, but instead it was a little kiss and hug and then I was off with just a couple of tears in the eyes.
Then I went and picked up the bathroom vanity we bought over the weekend. I think I know which taps I want.
So it's about 12:30, which means that she's no longer the woman she used to be. All things going well, they should be about half way through.
I think that's about all form now. Now, how do I post this??
Anyway, we trotted off to the hospital at 7:20 and announced ourselves. Then we had a wee wait in the Surg Admissions unit (they really need to change the channel when the infomercials start) before she got the final chats with the Anaesthetist, Surgical Reg, and Nurse. One sexy gown change later and we were off. Until the door leading towards the theatres, where I was given the polite eye (you know, when you're invited to p*ss off). For a brief second I though about going all National List MP on them and asking it they knew who I was, but instead it was a little kiss and hug and then I was off with just a couple of tears in the eyes.
Then I went and picked up the bathroom vanity we bought over the weekend. I think I know which taps I want.
So it's about 12:30, which means that she's no longer the woman she used to be. All things going well, they should be about half way through.
I think that's about all form now. Now, how do I post this??
Friday 24 May 2013
Surgery countdown.
I've been working through a crazy to-do list. Some of the less crazy items:
I'm starting to feel very nervous about the operation and this is probably not helped by my last appointment with the surgeon being cancelled. Vincent thinks that the surgeon did tell me about the operation, I didn't think that I got that much info. I suspect though that Vincent just understands about the operation and implications anyway. I'm second on the list on Monday: this means that the surgery is very likely to go ahead, even with emergencies and will probably start late morning. I still have to be at the hospital by 7.30am though. The nerves are probably because every time I see a friend or acquaintance they wish me luck for the operation!!! It feels like I am going away for a long time!
Just to add an extra frisson of excitement I have a problem with my eyes that led to an emergency optometrist appointment this morning and am off contact lenses for a few weeks (the timing is probably not that bad since I would have been using my glasses in the hospital anyway). Vincent has also injured his back and had to go to the After Hours doctor this morning. Yes, it was bad enough for a doctor to see a doctor and pay for it! He has some funky pills to take and hopefully will feel better soon. J has a very heavy cold and sore throat. H is OK healthwise except in nasty, separate incidents at the market this morning she and J both banged their heads. J walked into a pole and H went down the slide and into the knee of a boy who decided to climb up at the same time. Sigh.
- write out list of sample lunches and dinners for the nanny
- Freeze more food, including baking.
- Input important child related numbers into husband's phone.
- Pay all bills, set up APs for the nanny and creche
- Re-stock migraine medicine (just realised that this isn't so urgent as if I have one in hospital I'll be well loaded on pain meds already)
- Purchase less embarrassing pyjamas
- Plant out seedlings. I've been growing a lot of veges from seed so still have
- Load e-books onto iPad.
- Get sensible haircut (instead of trying to up-sell me with serums and styles that need blow-drying she actually had some good suggestions).
- Create kisses jar (the kids love this book called Zou and the jar of kisses). I've put lipstick kisses on little bits of paper.
- Tidy stuff.
- Make sure breast pump is working (no special news here, just lending it to a friend).
- Make lots of nice meals for Vincent and I to have together (because I'm not sure what the long term implications are of the surgery and diet I decided to 'carpe diem' and go nuts with the latest edition of Cuisine magazine).
I'm starting to feel very nervous about the operation and this is probably not helped by my last appointment with the surgeon being cancelled. Vincent thinks that the surgeon did tell me about the operation, I didn't think that I got that much info. I suspect though that Vincent just understands about the operation and implications anyway. I'm second on the list on Monday: this means that the surgery is very likely to go ahead, even with emergencies and will probably start late morning. I still have to be at the hospital by 7.30am though. The nerves are probably because every time I see a friend or acquaintance they wish me luck for the operation!!! It feels like I am going away for a long time!
Just to add an extra frisson of excitement I have a problem with my eyes that led to an emergency optometrist appointment this morning and am off contact lenses for a few weeks (the timing is probably not that bad since I would have been using my glasses in the hospital anyway). Vincent has also injured his back and had to go to the After Hours doctor this morning. Yes, it was bad enough for a doctor to see a doctor and pay for it! He has some funky pills to take and hopefully will feel better soon. J has a very heavy cold and sore throat. H is OK healthwise except in nasty, separate incidents at the market this morning she and J both banged their heads. J walked into a pole and H went down the slide and into the knee of a boy who decided to climb up at the same time. Sigh.
Sunday 19 May 2013
Flowers and forms
When Porse gets organised they are very thorough. Two reps came over today and took me through a dazzling array of paperwork. I gulped at the salary - it looks so much more when collated into the fortnightly amount! Gulp! Still, I have a feeling our Nanny will be worth every penny.
I have a few things left to do this week but feel as though I'm close to making all the arrangements I could possibly do. One thing I've been feeling sad about today is the garden. It became quite an obsession over summer and I've still got some seedlings grown from seed to plant out. I suspect the garden will be a bit of a jungle by the time I feel like doing much in there. I've thrown grass seeds over a lot of the 'developing' areas - it should help keep the weeds out until I feel like cultivating it later.
 |
| The massive stack of paperwork. My friends who have used Porse assure me that most of it is unnecessary. |
 |
The long rainy afternoon was made more pleasant by a surprise delivery of flowers. For the last five years I've been part of a very supportive online mother's network....they have been great friends and sounding boards and very kindly pooled together to send me these lovely flowers.
-------
One week to go and I'm starting to run out of things to prepare. We moved the furniture around upstairs today and so the children are now sharing a room. The other room will be for our live-in caregiver (Nana). They were so happy about sharing, they do love each other a lot (even though they seem to bicker a lot) and I was worried that it would be a long night. We took them to bed early so there would be a lot of time to get used to the arrangement. Incredibly surprisingly J went straight to sleep and H followed shortly after.
Although it feels as though I'm constantly pulling out Hannah's bed to find books that have fallen down the sides the amount of crap that we discovered under her bed was pretty impressive. Two 'lost' library books have emerged this weekend that I've already paid for. I'm going to take them back shamefacedly this week.
Wednesday 15 May 2013
Preparations continue
It is a full time job preparing to be a full time patient!
The woman we really wanted to take care of the children said yes and we are thrilled to have her start next week. Porse continues to be frustrating and annoying to deal with but on confirming with them that there were able to answer emails we have come to an understanding and they are now finally on to it. I have some kind of household inspection from them tomorrow and a chat where they will thrill me with the details of the package they offer. I'm being a little sarcastic, but honestly, they have been a nightmare.
My mother in law will probably come and stay for a week after Mum has left. I think it will be nice for the kids to see both Nana and Grandma and both Vincent and I are kind of looking forward to being 'looked after' too.
I haven't been able to get H into after school care but should be able to swing it with playdates.
What has been awesome this week is discovering so many friends who have useful pockets of information. One friend is making me some covers for the stoma bags (this is useful because it forced me to work out how the disgusting things work). I've said it before, but you can find out how to do ANYTHING on YouTube. The bags are connected to a sticker that goes on my skin and my all time pet peeve is removing plasters. The same friend became familiar with this product while her daughter was in hospital:
You just wipe it over plasters and it dissolves the adhesive. I bought ten of them at the chemist yesterday.
Another friend has sent through really nice messages about understanding stoma from a child's perspective. My children do not believe in bathroom privacy for parents so it is quite likely that they will see it at some point. I'm trying to find some children's resources on this topic.
After a bit of drama involving incorrect stock take data, multiple trips to various branches and an unlabelled item we found an acceptably priced and reasonably sized chest freezer. I hadn't quite thought how to get it inside the house but once I was able to get a park on my side of the street I just carried the jolly thing.
I started cooking meals but one friend was way ahead of me. I'd say that it is about a third full already! My children don't eat a lot of meals that freeze well (a massive mistake on my part) so I've been buying up large things like frozen dumplings and stuff that can just be steamed. J will be having some dinners at creche for a few weeks so I've frozen some small portions of casserole for her as well.
I've also been very cheered by all the books, movies and music people have lent me. I have to keep reminding myself that I'm preparing for surgery, not a big holiday!
I have a final appointment with the surgeon on Tuesday and then it is all go. It is hard to believe that it is only eleven more days to go.
-------
THANK YOU for all the kind messages and support. Honestly, some days it is our friends and family who are the reasons we make it through the day. Up until last weekend we were really struggling, but do really feel as though all the help is assisting us to prepare and get through the next few months.
The woman we really wanted to take care of the children said yes and we are thrilled to have her start next week. Porse continues to be frustrating and annoying to deal with but on confirming with them that there were able to answer emails we have come to an understanding and they are now finally on to it. I have some kind of household inspection from them tomorrow and a chat where they will thrill me with the details of the package they offer. I'm being a little sarcastic, but honestly, they have been a nightmare.
My mother in law will probably come and stay for a week after Mum has left. I think it will be nice for the kids to see both Nana and Grandma and both Vincent and I are kind of looking forward to being 'looked after' too.
I haven't been able to get H into after school care but should be able to swing it with playdates.
What has been awesome this week is discovering so many friends who have useful pockets of information. One friend is making me some covers for the stoma bags (this is useful because it forced me to work out how the disgusting things work). I've said it before, but you can find out how to do ANYTHING on YouTube. The bags are connected to a sticker that goes on my skin and my all time pet peeve is removing plasters. The same friend became familiar with this product while her daughter was in hospital:
You just wipe it over plasters and it dissolves the adhesive. I bought ten of them at the chemist yesterday.
Another friend has sent through really nice messages about understanding stoma from a child's perspective. My children do not believe in bathroom privacy for parents so it is quite likely that they will see it at some point. I'm trying to find some children's resources on this topic.
After a bit of drama involving incorrect stock take data, multiple trips to various branches and an unlabelled item we found an acceptably priced and reasonably sized chest freezer. I hadn't quite thought how to get it inside the house but once I was able to get a park on my side of the street I just carried the jolly thing.
I started cooking meals but one friend was way ahead of me. I'd say that it is about a third full already! My children don't eat a lot of meals that freeze well (a massive mistake on my part) so I've been buying up large things like frozen dumplings and stuff that can just be steamed. J will be having some dinners at creche for a few weeks so I've frozen some small portions of casserole for her as well.
I've also been very cheered by all the books, movies and music people have lent me. I have to keep reminding myself that I'm preparing for surgery, not a big holiday!
I have a final appointment with the surgeon on Tuesday and then it is all go. It is hard to believe that it is only eleven more days to go.
-------
THANK YOU for all the kind messages and support. Honestly, some days it is our friends and family who are the reasons we make it through the day. Up until last weekend we were really struggling, but do really feel as though all the help is assisting us to prepare and get through the next few months.
Saturday 11 May 2013
Childcare arrangements: Nanny interviews
Making childcare arrangements for the next few months is kind of a full time job at the moment. The arrangements we've made include a nanny, childcare and <fingers crossed> after school care/ pick ups from friends.
I requested the help of one of the big childcare agencies and they (eventually) got back to me. By the start of this week I had three CVs from them. However, one didn't meet the criteria, one was overseas and non-contactable and the other didn't call back - until yesterday. Luckily a friend happened across a woman keen on nannying during school holiday activities and collected her contact details.
I got a lot of good tips from friends about interviewing nannies:
I've interviewed people for jobs before but this felt quite high stakes. I was also once a manager for about six weeks during which the person required no particular management. But having a nanny, an employee, looking after your kids and who you will be forced to spend a lot of time with while very unwell feels kind of high stakes. Also, I really hated the two or three weeks that I used a nanny years ago via ACC when H was six months old (I sprained both ankles simultaneously in one of the weirdest ever accidents). I resented the heck out of that nanny because I wanted to be caring for H myself, and not a stranger. Also, we were just about oppositely sited on every single issue in life, including parenting. When she started ringing at night for medical advice from my husband we realised that she had no particular perspective on our working relationship and we solved the problem with my ankles healing and no longer needing help.
I interviewed two women and I'm really hoping the first woman agrees to taking the job. She has varied interests, a mature outlook, good educational and practical experience and seems really, really keen. She tried engaging both girls, had a fantastic CV (information and photos which worked well) and seems like she could deal with the unusual situation of one parent being at home but variously being able to engage with her child.
The other person I interviewed had a bit of a disaster interview. She got really lost finding our house and I spent ages outside our house in the rain trying to work out where she was and guide her over the phone. She has a nasty tooth infection and was in awesome bad pain. I tried really hard to ignore these factors and focus on the interview itself. I've learnt not to do a job interview in serious pain or ill health!
Finger's crossed the first nanny says yes!
After school care is proving tricky at the moment (they have a waiting list). I've spoken with the Headmaster for his ideas and he has been very helpful. There is a possibility of getting H into the programme and her teacher has offered to have H stay on a little later if necessary. We are very grateful to the school for their kind help. But it might only be a problem for a couple of weeks - between my Mum leaving and me being well enough to drive. We might be able to wing it with friends/ playdates etc.
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I had just relaxed after my mini hospital disaster earlier in the week when I got a call from the familiar 'blocked' number. After being assured that there was no hurry to get my blood tests done it seems that there was, in fact, a hurry to get them done. I took advantage of having the nurse on the phone to go over the prep instructions (I think these should be written down for all ops, not just the routine ones with prepared brochures). In an embarrassing moment I forgot the word for enema and had to describe the process while my brain tried to catch up!
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I'm assembling my emergency bag of books. Since I read quickly I need a lot of books around to satisfy my reading habit. I've trawled through the annual library book sale and the cheap bins in book stores. If I get a huge stack from the library before going in to the hospital I should be OK. My next plan is to download/ borrow a lot of DVDs.
_______
An oncologist friend has suggested that I self-refer to the Cancer Society and I think I will do it. I've been trying to minimise the 'cancer' part of all of this - after all, it is probably gone and the surgery is more of a preventative need rather than a cure. But they do have great written resources and a lot of support (bowel cancer doesn't really have any kind of glamorous support organisations/ foundations, just some sensible information booklets and kind people acting as peer support).
I requested the help of one of the big childcare agencies and they (eventually) got back to me. By the start of this week I had three CVs from them. However, one didn't meet the criteria, one was overseas and non-contactable and the other didn't call back - until yesterday. Luckily a friend happened across a woman keen on nannying during school holiday activities and collected her contact details.
I got a lot of good tips from friends about interviewing nannies:
- Judge not the presentation of their CVs. Only one of the CVs I received looked like any kind of CV I've written before. I would have been horrified had I not been prepared. But I need to recognise the CVs I've written for jobs I've applied for need to present information differently than the CVs of people who professionally do childcare.
- Nannies may not engage well with you, but it is mostly how they engage with the children.
- Being a good employer is important - remembering that nannies can be quite vulnerable in their employment as they are often the only employee in the house, and might not be great at standing up for themselves. We have tried hard to get good salary information so that we can offer a fair, liveable salary.
I've interviewed people for jobs before but this felt quite high stakes. I was also once a manager for about six weeks during which the person required no particular management. But having a nanny, an employee, looking after your kids and who you will be forced to spend a lot of time with while very unwell feels kind of high stakes. Also, I really hated the two or three weeks that I used a nanny years ago via ACC when H was six months old (I sprained both ankles simultaneously in one of the weirdest ever accidents). I resented the heck out of that nanny because I wanted to be caring for H myself, and not a stranger. Also, we were just about oppositely sited on every single issue in life, including parenting. When she started ringing at night for medical advice from my husband we realised that she had no particular perspective on our working relationship and we solved the problem with my ankles healing and no longer needing help.
I interviewed two women and I'm really hoping the first woman agrees to taking the job. She has varied interests, a mature outlook, good educational and practical experience and seems really, really keen. She tried engaging both girls, had a fantastic CV (information and photos which worked well) and seems like she could deal with the unusual situation of one parent being at home but variously being able to engage with her child.
The other person I interviewed had a bit of a disaster interview. She got really lost finding our house and I spent ages outside our house in the rain trying to work out where she was and guide her over the phone. She has a nasty tooth infection and was in awesome bad pain. I tried really hard to ignore these factors and focus on the interview itself. I've learnt not to do a job interview in serious pain or ill health!
Finger's crossed the first nanny says yes!
After school care is proving tricky at the moment (they have a waiting list). I've spoken with the Headmaster for his ideas and he has been very helpful. There is a possibility of getting H into the programme and her teacher has offered to have H stay on a little later if necessary. We are very grateful to the school for their kind help. But it might only be a problem for a couple of weeks - between my Mum leaving and me being well enough to drive. We might be able to wing it with friends/ playdates etc.
------------
I had just relaxed after my mini hospital disaster earlier in the week when I got a call from the familiar 'blocked' number. After being assured that there was no hurry to get my blood tests done it seems that there was, in fact, a hurry to get them done. I took advantage of having the nurse on the phone to go over the prep instructions (I think these should be written down for all ops, not just the routine ones with prepared brochures). In an embarrassing moment I forgot the word for enema and had to describe the process while my brain tried to catch up!
-----------
I'm assembling my emergency bag of books. Since I read quickly I need a lot of books around to satisfy my reading habit. I've trawled through the annual library book sale and the cheap bins in book stores. If I get a huge stack from the library before going in to the hospital I should be OK. My next plan is to download/ borrow a lot of DVDs.
_______
An oncologist friend has suggested that I self-refer to the Cancer Society and I think I will do it. I've been trying to minimise the 'cancer' part of all of this - after all, it is probably gone and the surgery is more of a preventative need rather than a cure. But they do have great written resources and a lot of support (bowel cancer doesn't really have any kind of glamorous support organisations/ foundations, just some sensible information booklets and kind people acting as peer support).
Tuesday 7 May 2013
Bluergh
I think that the health sector, and hospitals in particular, work really hard to be patient centred and deliver good service. But I'm not feeling that much at the moment, I'm sure mostly due to the acuity of the situation. Everything is urgent and hurried and I'm feeling rushed along.
It is still less than a month since my colonoscopy and bad news and I'm three weeks away from major surgery. I've had so very many appointments and they keep coming. This morning I had anaesthetic pre-assessment which in the past meant a lot of waiting to see the registrar before demonstrating that I could open my mouth widely and put my head back. Today's anaesthetic pre-assessment was therefore a shocker:
As someone who has developed hospital forms, and audited them, I can't think of a solution to this problem. Everyone wants there own clearly identifiable form, and everyone wants the form filled in using the most current information (usually from the patient). But there needs to be some consideration of the patient experience as well, and it is hard to have confidence in the system to communicate when information in consecutively completed forms is substantially repeated.
No parking ticket thank goodness - even though I was more than an hour past the maximum time.
I'm still kind of stunned at how much the appointment took out of me. I found it gruelling, and got very close to tears for reasons I can't quite work out. I'm glad it is done, and at this stage I have no notice of any more tests/ appointments/ imaging/ procedures. The surgery is still on for 27 May.
It is still less than a month since my colonoscopy and bad news and I'm three weeks away from major surgery. I've had so very many appointments and they keep coming. This morning I had anaesthetic pre-assessment which in the past meant a lot of waiting to see the registrar before demonstrating that I could open my mouth widely and put my head back. Today's anaesthetic pre-assessment was therefore a shocker:
- Meet the nurse taking my weight, BP, height and who performed an ECG. My height and weight were the same as last week, my BP slightly lower and I've never had an ECG before. I thought that it would take ages, but it actually took longer to put on all the sticky connections than get the print out.
- Meet the anaesthetist who went through all notes from previous operations, listened to my chest and confirmed I could open my mouth. Lots of questions and discussions re pain relief. Those anaesthetists have some nifty tricks I'll tell you what. There seems to be just about nowhere that they can't stick in an epidural or similar and pump you full of morphine. Good to know.
- The 'enhanced recovery' something nurse who went over the hospitals 'expectations' of me while I'm in hospital. Very little lounging around will be allowed! They also went through a check-list to see if I had made sufficient arrangements to be out of action. This felt patronising, although I get it is important. Given I spend most of every day at the moment making arrangements for the care of the girls, I was unimpressed with their query. In the end I just said it was covered. I have a little book that I am supposed to fill in each day in hospital detailing my eating, drinking and time up (up means sitting up at least in bed).
- The stoma nurse. This was sobering. She did have heaps of good written info, pictures and knowledge about life between surgeries and after the second one. I got an inappropriately cheerful free 'gift bag' of stoma stuff. I need to drink more water and eat more salt after the operation. I asked about resources to explain the stoma to kids, she will look into it. Stoma look dreadful and alarming - they are bright red. I'm not currently inclined to let the kids see it.
- The first nurse came back in and gave me an enema pack for the morning off the operation and some yellow carb drinks for the morning of the op. The nurse sounded as though she didn't quite believe the reasoning behind the drinks. It sounded kind of 'pseudo science' to me - but then the drink is produced by Nutricia, and I'm still kind of anti them from my breastfeeding days.
- A House Surgeon and Trainee Intern then came in to ask me every single question I'd just been asked again. At this point I got annoyed with the repetition and started explaining where they could find the info rather than giving it again. This was kind of pointless as it made things longer, but the duplication was starting to seriously annoy me. The TI listened to my chest, got all excited when she thought she heard something, and looked a little crestfallen when the House Surgeon disagreed. The Anaesthetist listened longer and more thoroughly than either of these guys so I was not bothered by this.
As someone who has developed hospital forms, and audited them, I can't think of a solution to this problem. Everyone wants there own clearly identifiable form, and everyone wants the form filled in using the most current information (usually from the patient). But there needs to be some consideration of the patient experience as well, and it is hard to have confidence in the system to communicate when information in consecutively completed forms is substantially repeated.
No parking ticket thank goodness - even though I was more than an hour past the maximum time.
I'm still kind of stunned at how much the appointment took out of me. I found it gruelling, and got very close to tears for reasons I can't quite work out. I'm glad it is done, and at this stage I have no notice of any more tests/ appointments/ imaging/ procedures. The surgery is still on for 27 May.
Thursday 2 May 2013
MRI, a surgery date and telling the children
I had an MRI last night. The hospital has such a backlog in radiology that they are doing imaging in the evenings. I was hemming and hawing about getting the offered sedation....but they would have had to call the radiology registrar or house surgeon and I decided to just go for it. I'm a touch claustrophobic, but only if I feel stuck. You are allowed to take along a disc to play so I went through the paltry options from my iPhone and made an MRI mix. I decided to make an upbeat, silly mix because maudlin music would be unhelpful. It never occurred to me that the MRTs would hear it as well.....and I'm quite embarrassed about the first choice, 'Tubthumping' by Chumbawamba. In my (small) defence I got the melody of this stuck in my head for a couple of days back in my youth, and I thought that it might be nicely distracting. The MRTs were quite chuffed, they said that Country and Western music was the most common music people brought in to play.
If you have never had and MRI, but have small children I can probably explain the noise to you. There is an ongoing drill like noise. It is punctuated by what is best described as a two year old hitting the same electronic keyboard low note rapidly, on full volume, while stuck on 'harpsichord' function. For variety, there is also a noise that sounds like Pacman eating at great speed.
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Today I was called with a surgery date. I'd hoped that it might be six weeks or so, but when the colo-rectal surgeon says four weeks, I guess it is four weeks. Weirdly enough my first thought was that I would have to cancel my tickets to Handmade 2013. Going to Handmade has been like my 'Mum continuing education' the last two years so I am disproportionately angry that I will miss it.
I renewed efforts to get the childcare sorted out. It is amazing how many people say that they will email you straight away, and do not. My baseline politeness level is dropping.
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I used to love getting 'blocked' calls on my cellphone. It is usually my husband calling from one of his workplaces. Now it is always the hospital with another appointment. I had a circular conversation about why 8.50 am appointments on a school day are difficult to make, followed by being offered the same slot a week later. Sigh.
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And for the bit I'm dreading writing. I sat down with our daughter this evening to let her know what is going on. We have spent a lot of time thinking what to say and this is what we came up with:
----
I'm not sure there is much I can do to prepare my youngest. I'm focussing on telling her that the hospital is a place for sick people and pointing it out whenever we drive past.
If you have never had and MRI, but have small children I can probably explain the noise to you. There is an ongoing drill like noise. It is punctuated by what is best described as a two year old hitting the same electronic keyboard low note rapidly, on full volume, while stuck on 'harpsichord' function. For variety, there is also a noise that sounds like Pacman eating at great speed.
-----
Today I was called with a surgery date. I'd hoped that it might be six weeks or so, but when the colo-rectal surgeon says four weeks, I guess it is four weeks. Weirdly enough my first thought was that I would have to cancel my tickets to Handmade 2013. Going to Handmade has been like my 'Mum continuing education' the last two years so I am disproportionately angry that I will miss it.
I renewed efforts to get the childcare sorted out. It is amazing how many people say that they will email you straight away, and do not. My baseline politeness level is dropping.
-----
I used to love getting 'blocked' calls on my cellphone. It is usually my husband calling from one of his workplaces. Now it is always the hospital with another appointment. I had a circular conversation about why 8.50 am appointments on a school day are difficult to make, followed by being offered the same slot a week later. Sigh.
-----
And for the bit I'm dreading writing. I sat down with our daughter this evening to let her know what is going on. We have spent a lot of time thinking what to say and this is what we came up with:
- Mum has a disease in her bowel (bottom). The disease will get worse if I have no treatment.
- The best treatment is for Mum to have her bowel removed.
- It is a very serious operation.
- Mum will be in hospital for five days (this is when she started crying).
- Dad and Nana will take care of her, and put her to bed. She can call me to say goodnight on the phone.
- We might have a nanny help out a couple of days a week.
- Mum will not be able to lift anything, or drive the car.
- After I get better, I will need another operation. I will return to the hospital, hopefully for a shorter time.
- I will need to recover again.
- She will continue to go swimming and go to playgroup.
- The operation means Mummy will be sick for a long time, but will be better in the long term.
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I'm not sure there is much I can do to prepare my youngest. I'm focussing on telling her that the hospital is a place for sick people and pointing it out whenever we drive past.
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