grahams mum
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- Relationship to Diabetes
- Parent of person with diabetes
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Newbie here. mum of recently diagnosed 8 yr old with type 1
- Thread starter Gemma444
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Sugarbum
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi Gemma,
Sorry to come into this thread abit late, I have only just seen it and just wanted also to welcome you. I cant offer you better advice than the others you have met already (and they will continue to offer you brilliant support- you have been referred by forum royalty!) but I still wanted to say hi.
I am sure you are probably going through a dreadful time and with much stress. I might not be able to personally advise but we are here for you, even (as we often say) just if you need a bloody good rant or to let off steam!
I really hope your son gets better numbers soon and things become more managable.
Thinking of you and once again, welcome.
Lou x
Sorry to come into this thread abit late, I have only just seen it and just wanted also to welcome you. I cant offer you better advice than the others you have met already (and they will continue to offer you brilliant support- you have been referred by forum royalty!) but I still wanted to say hi.
I am sure you are probably going through a dreadful time and with much stress. I might not be able to personally advise but we are here for you, even (as we often say) just if you need a bloody good rant or to let off steam!
I really hope your son gets better numbers soon and things become more managable.
Thinking of you and once again, welcome.
Lou x
Hi Adrienne
thank you so much for you message this is really helpful. i agree about the 2 injections, we dont seem to be getting anywhere with it. It is really stressing me out and i blaming myslef when jacks having a hypo or hyper ( i know i shudnt). he had both yesterday. hyper before his 2nd injection and then hypo before bed. the hypos are happening regular just before lunch time. yesterday was the first time he had a hypo before bedtime but our DN put his insulin down to 7 units 2 days ago and i had a feeling it would happen.
I will go out and try the cereal bars, i think i will get the harvest chewee ones to start off with. Going to go get some from tesco in a bit anymore good ideas for snacks?
Hi Lou and grahams mum how are you both?
gem xxx
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Hi Gem
Hope I've caught you before you go. If you are looking for no carb snacks so he can eat then whenever then you need to think protein really, cheese strings, ham, hard boiled eggs, peperami etc etc.
You can use any 15 cho snack for actual snack time. However we always found fruit did nothing to help so we couldn't use fruit as a proper 15 cho snack. You can use crisps, toast, biscuits anything that adds up to 15 cho. Avoid raisins, they are hugely high as are grapes.
Gotta go out but will be back later so ask anything you want and if i can help I will do.
Take a look at www.childrenwithdiabetesuk.org It is a website purely for parents of children with diabetes. They have an email group which is absolutely phenomenal. It is different from here as it is an email group rather than forum and it is purely for children. I use both as the people on here are now friends but the email group will have information for you galore. If you do join you will be inundated with emails but you can choose which to delete and which to read.
Hope I've caught you before you go. If you are looking for no carb snacks so he can eat then whenever then you need to think protein really, cheese strings, ham, hard boiled eggs, peperami etc etc.
You can use any 15 cho snack for actual snack time. However we always found fruit did nothing to help so we couldn't use fruit as a proper 15 cho snack. You can use crisps, toast, biscuits anything that adds up to 15 cho. Avoid raisins, they are hugely high as are grapes.
Gotta go out but will be back later so ask anything you want and if i can help I will do.
Take a look at www.childrenwithdiabetesuk.org It is a website purely for parents of children with diabetes. They have an email group which is absolutely phenomenal. It is different from here as it is an email group rather than forum and it is purely for children. I use both as the people on here are now friends but the email group will have information for you galore. If you do join you will be inundated with emails but you can choose which to delete and which to read.
Hya Adrienne
You have been a great help you, im extreamly greatful. I have found the harvest cheewe bars from tesco, they are on offer for a ?1 for 9 bars so thats good. I have also got him some cheese string for inbetween snacks when hes hungry (hes a growing boy and i have been stuggling with what to give him inbetween snack times when he says he's hungry). I found the same when i gave Jack fruit as a snack it did nothing and by dinner he had a hypo so not going to make that mistake again. Im going to speak to my DSN nurse Monday and explain all the concerns I have. Then it should be the school appoitment some time Tuesday, crossing my fingers hat it goes ok.
I have joined the other website and im on the mailing list. I havent had time to read the emails yet but i will try later on.
thanks again for your help I do really apeciate it
Gem xxxxx
You have been a great help you, im extreamly greatful. I have found the harvest cheewe bars from tesco, they are on offer for a ?1 for 9 bars so thats good. I have also got him some cheese string for inbetween snacks when hes hungry (hes a growing boy and i have been stuggling with what to give him inbetween snack times when he says he's hungry). I found the same when i gave Jack fruit as a snack it did nothing and by dinner he had a hypo so not going to make that mistake again. Im going to speak to my DSN nurse Monday and explain all the concerns I have. Then it should be the school appoitment some time Tuesday, crossing my fingers hat it goes ok.
I have joined the other website and im on the mailing list. I havent had time to read the emails yet but i will try later on.
thanks again for your help I do really apeciate it
Gem xxxxx
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
No problem, I'm here to help. If you want my phone number or personal email then ask and I'll PM you. I'll see you on the other list as well then. You'll find a few of us on there, Becca, Bev and Patricia. x
Hello
Thought i would put a quick update on. J went Back to school Wednesday there has been some teething problems. yesterday they cudnt ge the blood out of jS finger to do the b/s and when they eventually did it was 1.2 which i think was an error, they rang my partner and he went up (luckly it was his day off) but instead of repeating the b/s they gave him 3 dextrose tablet and when my partner did the b/s it was 11.2. Just wish they would of waited for my partner or re-did the b/s before they gave J the dextroses tablets. J has told me today that they arent giving him his morning snacks that i have supplied. No wonder hes having hypos if thats the case. J said that the school said he doesnt need the snack unless he doesn't feel well so I'm going to ring them Monday and sort all this out.
Gem xx
Thought i would put a quick update on. J went Back to school Wednesday there has been some teething problems. yesterday they cudnt ge the blood out of jS finger to do the b/s and when they eventually did it was 1.2 which i think was an error, they rang my partner and he went up (luckly it was his day off) but instead of repeating the b/s they gave him 3 dextrose tablet and when my partner did the b/s it was 11.2. Just wish they would of waited for my partner or re-did the b/s before they gave J the dextroses tablets. J has told me today that they arent giving him his morning snacks that i have supplied. No wonder hes having hypos if thats the case. J said that the school said he doesnt need the snack unless he doesn't feel well so I'm going to ring them Monday and sort all this out.
Gem xx
Hi Gem,
What on earth are the school thinking of? How DARE they tell J he doesnt need a snack? I hope this is a misunderstanding and not the school thinking they know best? The point of him having the snack is to avoid the hypo - why should he wait until he doesnt feel well to have the snack? Also, a snack isnt what he should be having if he doesnt feel well - he should be having glucose!
Gem have you got this in the school care plan about snacks? He should NEVER be refused a snack if it stops him having a later hypo.
The bg test sounds as if they have read it wrong - but it should have gone up after 3 dextrose tabs? Odd. Perhaps you could watch them test him at lunch one day to see how they do it?😱Bev
What on earth are the school thinking of? How DARE they tell J he doesnt need a snack? I hope this is a misunderstanding and not the school thinking they know best? The point of him having the snack is to avoid the hypo - why should he wait until he doesnt feel well to have the snack? Also, a snack isnt what he should be having if he doesnt feel well - he should be having glucose!
Gem have you got this in the school care plan about snacks? He should NEVER be refused a snack if it stops him having a later hypo.
The bg test sounds as if they have read it wrong - but it should have gone up after 3 dextrose tabs? Odd. Perhaps you could watch them test him at lunch one day to see how they do it?😱Bev
Hya Bev
I know I wasnt happy earlier I just hope they have made a mistake but they should listen to J, he does know what hes talking about. he will be a little expert before I know it haha. ye its in the careplan and we discussed this with them on tuesday. I will sort it out on Monday.I will mention this to our DSN aswell just to make sure she has put everything clear in the careplan.
We have our first clinc appt on 1st October. What do they go through on the first appt?
Gem xx
I know I wasnt happy earlier I just hope they have made a mistake but they should listen to J, he does know what hes talking about. he will be a little expert before I know it haha. ye its in the careplan and we discussed this with them on tuesday. I will sort it out on Monday.I will mention this to our DSN aswell just to make sure she has put everything clear in the careplan.
We have our first clinc appt on 1st October. What do they go through on the first appt?
Gem xx
Hello Gemma
I'm sorry I've only just connected things from the other email group...anyway, welcome here.
It sounds like you are having such a rough time, and it's such early days. I really feel for you. You are doing the right things though by trying to get the school sorted and working with your son's levels... Adrienne and Mand are best placed to help with your insulin regime, but I'm here for everything else too! We started straight onto MDI and are now on the pump.
Snacks-wise, we used sainsbury's maple go ahead bars a lot, and Alpen Light fudge cereal bars. Both of these are 15g carb, and don't have fruit or yoghurt on them, which E couldn't stand. Also, all of the little packets of biscuits: mcvitties choc digestives and choc chip, and Maryland choc chip -- are 15 g carb, and very portable. Other things we used for 15g carb snacks without much 'holding' power but still tasty were the Muller light yoghurts and ski light yoghurts. Also, a frube tube only has 5g carb, so that's something! and Bev introduced us to the Mikado choc finger stick things, at only 1.5g carb each!
Carb free snacks were a huge problem with us, as E is 13 and has always been a hungry child. We ended up pre-cooking lots of good quality sausages (have to be good quality, otherwise they have carb in them as filler), and he would eat them cold. Also, cheese cubes, nuts, all cold meats, and many plain yoghurts (if he'll eat them without sugar!). These are all expensive items of course, but it's hard to find things that aren't expensive with no carb I think. Sorry. We found it irritating and our food bills went up, certainly.
Well Gemma, I'll keep my eye out for how things are going for you. It will get better. And again, sorry to come to this late.
All best.
I'm sorry I've only just connected things from the other email group...anyway, welcome here.
It sounds like you are having such a rough time, and it's such early days. I really feel for you. You are doing the right things though by trying to get the school sorted and working with your son's levels... Adrienne and Mand are best placed to help with your insulin regime, but I'm here for everything else too! We started straight onto MDI and are now on the pump.
Snacks-wise, we used sainsbury's maple go ahead bars a lot, and Alpen Light fudge cereal bars. Both of these are 15g carb, and don't have fruit or yoghurt on them, which E couldn't stand. Also, all of the little packets of biscuits: mcvitties choc digestives and choc chip, and Maryland choc chip -- are 15 g carb, and very portable. Other things we used for 15g carb snacks without much 'holding' power but still tasty were the Muller light yoghurts and ski light yoghurts. Also, a frube tube only has 5g carb, so that's something! and Bev introduced us to the Mikado choc finger stick things, at only 1.5g carb each!
Carb free snacks were a huge problem with us, as E is 13 and has always been a hungry child. We ended up pre-cooking lots of good quality sausages (have to be good quality, otherwise they have carb in them as filler), and he would eat them cold. Also, cheese cubes, nuts, all cold meats, and many plain yoghurts (if he'll eat them without sugar!). These are all expensive items of course, but it's hard to find things that aren't expensive with no carb I think. Sorry. We found it irritating and our food bills went up, certainly.
Well Gemma, I'll keep my eye out for how things are going for you. It will get better. And again, sorry to come to this late.
All best.
hi all
thought i would post a update. J went to his clinic appt a few weeks ago and his hba1c was 9.5, not good. The doctor changed his insulin to humalog mix 25. first few days on the new insuilin we okish he didnt go over 7.9 but after those few days they went back to the highs before tea like today he was 15.5, yesterday 17.2 etc. he still seems to be going low before dinner aswell but its hard to keep track of with him not doing the b/g before lunch at school. i have asked the school to do the b/g today but i havent been able to get a correct answer from Jack as its a long time for a 8 yr old to rememebr his b/g result from 12:30 to tell me when i get home from work at 4:30pm so i'm unable to add or take off a unit of his morning insulin tomorrow as J's DSN advised as i dont know what the results were.
Im feeling like its my fault all the time as we arent having many good days at the mom.
Gem xx
thought i would post a update. J went to his clinic appt a few weeks ago and his hba1c was 9.5, not good. The doctor changed his insulin to humalog mix 25. first few days on the new insuilin we okish he didnt go over 7.9 but after those few days they went back to the highs before tea like today he was 15.5, yesterday 17.2 etc. he still seems to be going low before dinner aswell but its hard to keep track of with him not doing the b/g before lunch at school. i have asked the school to do the b/g today but i havent been able to get a correct answer from Jack as its a long time for a 8 yr old to rememebr his b/g result from 12:30 to tell me when i get home from work at 4:30pm so i'm unable to add or take off a unit of his morning insulin tomorrow as J's DSN advised as i dont know what the results were.
Im feeling like its my fault all the time as we arent having many good days at the mom.
Gem xx
Steff
Little Miss Chatterbox
- Relationship to Diabetes
- Type 2
aww hi gemma sorry to hear things are not going so great at the moment , i have bad days myself but i cant imagine how hard it must be for you im on pills and t2 so no where near anything like your child , but i know the parents in here will give you loads of support i just wanted to say i hope things start to get better and you know this place is always here for you hun xxxx
Hi Gemma!
Really sorry to hear little J is suffering.
The first thing you have to do tomorrow morning is go in and see the teacher (or whoever) and give them a 'communication book' or log book. You need them to write down everything that happens in the school day i.e. hypo's hyper's and blood testing. Tell them that you cannot possibly know how much insulin to give him later in the day if you dont have these figures.
You must make it clear to school that J will not be able to concentrate if he is high or low. If he is high this has a knock on effect through the night and he will be up weeing for England - so he wont be any use at school if he is tired. If they dont listen to you and act on it -then send a formal letter requesting that they do these things. If they still wont do it - then i think this comes under the DDA.
If they are not happy to do this - then ring the DSN. Its ridiculous to expect a little 8 year old to remember what has been done through the school day - not your fault - i mean the school. Alex had a little book that the teacher used to write in and tell me about hypo's etc.. it took seconds so not a lot of time!
The very next thing you need to do is ring the DSN and tell her that these mixes dont work for J. Have you asked them about MDI -the 4 injections a day method? Not many clinics use the mixes anymore for the reasons you state above - you just simply cannot get good control (or any) with this method - that is why its being phased out. If they wont entertain the MDI regimen - then its time to change hospitals. This is very easy to do - they cant say no. If you go on the other 'list' there will be lots of people who can help you do this. Someone has a template letter that you can use to send to your clinic requesting a different hospital. (preferably one that has pumpers!).
I know how helpless you will feel - but its not your fault or J's. You have been given the wrong regimen for him and you will never gain good control until things change. Please repeat what you have said here on the other list - you will get tons of advice and support off mums who have been through the same as you.
Let us know how things go with the school - this isnt fair to J or you.😱 Bev xxx
Really sorry to hear little J is suffering.
The first thing you have to do tomorrow morning is go in and see the teacher (or whoever) and give them a 'communication book' or log book. You need them to write down everything that happens in the school day i.e. hypo's hyper's and blood testing. Tell them that you cannot possibly know how much insulin to give him later in the day if you dont have these figures.
You must make it clear to school that J will not be able to concentrate if he is high or low. If he is high this has a knock on effect through the night and he will be up weeing for England - so he wont be any use at school if he is tired. If they dont listen to you and act on it -then send a formal letter requesting that they do these things. If they still wont do it - then i think this comes under the DDA.
If they are not happy to do this - then ring the DSN. Its ridiculous to expect a little 8 year old to remember what has been done through the school day - not your fault - i mean the school. Alex had a little book that the teacher used to write in and tell me about hypo's etc.. it took seconds so not a lot of time!
The very next thing you need to do is ring the DSN and tell her that these mixes dont work for J. Have you asked them about MDI -the 4 injections a day method? Not many clinics use the mixes anymore for the reasons you state above - you just simply cannot get good control (or any) with this method - that is why its being phased out. If they wont entertain the MDI regimen - then its time to change hospitals. This is very easy to do - they cant say no. If you go on the other 'list' there will be lots of people who can help you do this. Someone has a template letter that you can use to send to your clinic requesting a different hospital. (preferably one that has pumpers!).
I know how helpless you will feel - but its not your fault or J's. You have been given the wrong regimen for him and you will never gain good control until things change. Please repeat what you have said here on the other list - you will get tons of advice and support off mums who have been through the same as you.
Let us know how things go with the school - this isnt fair to J or you.😱 Bev xxx
Hi Gemma, great advice from bev for sure!
J. has a home monitoring diary at school as well as the one at home and teachers write everything in it and I check it every afternoon at 4 when I pick him up. I also use post it notes in his diary to give extra info to the teachers if necessary like if he's been hypo at home before school/during night etc. At first I worried the teachers might think it extra work to fil in diary and communicate wmore with me but I've come to realize that they feel reassured by it- J is the only child the school has had in recent history with T1 so most teachers know very little about it. Our DSN has done a meeting with a couple of teachers and is going back after half term to talk to some of the others.
Good luck with the hospital.
C x 🙂
J. has a home monitoring diary at school as well as the one at home and teachers write everything in it and I check it every afternoon at 4 when I pick him up. I also use post it notes in his diary to give extra info to the teachers if necessary like if he's been hypo at home before school/during night etc. At first I worried the teachers might think it extra work to fil in diary and communicate wmore with me but I've come to realize that they feel reassured by it- J is the only child the school has had in recent history with T1 so most teachers know very little about it. Our DSN has done a meeting with a couple of teachers and is going back after half term to talk to some of the others.
Good luck with the hospital.
C x 🙂
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Hi Gemma
Sorry to hear you are having problems.
However these are problems that are being faced by lots of mums around the UK with schools who don't really know how to handle a child with diabetes who has a mum who cares !!! Some mums just leave their child at school and thats that diabetes disappears for a few hours, seriously this happens!! Not so the rest of us.
The school should have a care plan written out which should be signed by you and the school. This should state absolutely everything they need to know about J and his care and every eventuality ie PE, swimming, lunchtimes etc.
I feel that your medical team are seriously letting you down. Personally I feel they are no good anyway as they have put J on mixed insulins and as Bev says there is no way you will get good control. I only know two children who have excellent levels on mixes and this is out of about 300 plus children I know of with diabetes. J needs to go onto MDI as soon as you can manage to do it. You should be taught carb counting as well to get great control by your team.
Take a look at www.childrenwithdiabetesuk.org and have a look at the care plan entitled 'I am Rose'. Becca has written this for her daughter and its there for anyone to use and alter to their needs. Its brilliant.
Good luck.
Sorry to hear you are having problems.
However these are problems that are being faced by lots of mums around the UK with schools who don't really know how to handle a child with diabetes who has a mum who cares !!! Some mums just leave their child at school and thats that diabetes disappears for a few hours, seriously this happens!! Not so the rest of us.
The school should have a care plan written out which should be signed by you and the school. This should state absolutely everything they need to know about J and his care and every eventuality ie PE, swimming, lunchtimes etc.
I feel that your medical team are seriously letting you down. Personally I feel they are no good anyway as they have put J on mixed insulins and as Bev says there is no way you will get good control. I only know two children who have excellent levels on mixes and this is out of about 300 plus children I know of with diabetes. J needs to go onto MDI as soon as you can manage to do it. You should be taught carb counting as well to get great control by your team.
Take a look at www.childrenwithdiabetesuk.org and have a look at the care plan entitled 'I am Rose'. Becca has written this for her daughter and its there for anyone to use and alter to their needs. Its brilliant.
Good luck.
hi bev, carynb and adrienne
thanks so much for all you help, I'm going to photocopy a few of J's home monitring diary pages at work to give the school as we only have the one diary or get a little book he can take into school.
adrienne, i can't find that i am rose care plan could you point me in the right direction please.
I have spoken to the school today as J's b/g was 2.2 before lunch, dont know how that happened!!! I dont think he had his cereal bar for mid-morning snack, yesterday before lunch he was 12.6.
Also wanted to ask you all how far from diagnosis were you told to give correction doses? We havent got that far yet.
I will speak to our DSN again after the weekend and explain my worries also the school was asking me about carbs and i felt a bit silly as they asked how many carbs can J have per meal and all i have been told is carbs with every meal and then snacks must be 10-15g of carbs. Any advice here would be great.
thanks
Gem
thanks so much for all you help, I'm going to photocopy a few of J's home monitring diary pages at work to give the school as we only have the one diary or get a little book he can take into school.
adrienne, i can't find that i am rose care plan could you point me in the right direction please.
I have spoken to the school today as J's b/g was 2.2 before lunch, dont know how that happened!!! I dont think he had his cereal bar for mid-morning snack, yesterday before lunch he was 12.6.
Also wanted to ask you all how far from diagnosis were you told to give correction doses? We havent got that far yet.
I will speak to our DSN again after the weekend and explain my worries also the school was asking me about carbs and i felt a bit silly as they asked how many carbs can J have per meal and all i have been told is carbs with every meal and then snacks must be 10-15g of carbs. Any advice here would be great.
thanks
Gem
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Hiya
Have a look here :
http://www.childrenwithdiabetesuk.org/index.php?page=for-parents
I am Rose is on that page. You will also find other documents that will help you at school.
Your school seem to know about carb counting - odd. I wonder if one of the canteen staff have type 1 or live with someone with type 1. When you are on MDI (4 or more injections) or pumping you have to carb count. You get so much better control by counting the carbs you eat. You do not have to have a set amount you just give insulin to cover the amount of carbs you eat.
However your son is on mixes so carb counting becomes hard. I only know one family that has made carb counting work for them whilst on mixes. When on mixes you essentially inject a fixed amount morning and night and you then feed the insulin, there is no way around it. On MDI or pumping you give insulin when you eat carbs !
So on mixes if you make sure he has the same amount of carbs per meal ie every breakfast have 35 carbs ie 2 weetabix and 200 ml of semi skimmed milk , every lunch have say 50 carbs ie jacket potato or oven chips or mash or 200 grams of cooked pasta but always adding up to 50 carbs and for tea have say 60 grams but every day.
If he eats the same number of carbs per meal and you never stray from that (doesn't matter what carbs at this stage) then you may get ok ish levels on mixes (doubt it but could be worth a try). I think your best move is just to go for MDI or even better a pump. According to the NICE guidelines under the age of 12 you do not even have to try MDI, you skip that bit and just go from mixes to pumping. I would do that. You will never ever look back and wonder why the hell you didn't make the jump sooner. However that is your decision of course.
I hope that helps.
Hya Adrienne
Thanks for the link i have read it and it is really helpful. Im gonna try and give the carb thing a go, got to try something until mybe they change Jacks insulin. We have woke this morning to b/g of 19.2 and ketones 0.1
Also i just wanted to ask your advise on something. we were told in the next few days to reduce J's insulin or increase if hes going hypo or hyper before lunch, well on thurday he was 12.6 i would have given him a extra unit the next morning but i was unable to get this info from school until friday mid-day so friday morning i gave him his unsual 6 units, now yesterday he was hypo at school before lunch but I havent taken a unit off this morning with him being 19.2. Do you think i have done the right thing?
gem x
Thanks for the link i have read it and it is really helpful. Im gonna try and give the carb thing a go, got to try something until mybe they change Jacks insulin. We have woke this morning to b/g of 19.2 and ketones 0.1
Also i just wanted to ask your advise on something. we were told in the next few days to reduce J's insulin or increase if hes going hypo or hyper before lunch, well on thurday he was 12.6 i would have given him a extra unit the next morning but i was unable to get this info from school until friday mid-day so friday morning i gave him his unsual 6 units, now yesterday he was hypo at school before lunch but I havent taken a unit off this morning with him being 19.2. Do you think i have done the right thing?
gem x
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Hi
The normal pattern for mixes is you are high mid morning and you are hypo by lunch time. You cannot change that unfortunately. So this is where snacks are imperative. Yes you did the right thing definitely but he will need a snack.
Sorry gotta go out.
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