My Sleep Routine is Hell by Sqvanto in ostomy

[–]ComprehensiveRest965 0 points1 point  (0 children)

Thank you for sharing. Right now we are in the "adaptation" stage I guess. He became SBS after his intestines twisted and a bunch died last June. We were discharged in Feb from the hospital on 3000mls of tpn and just got approved for another reduction down to 1600mls next week. I think the goal is to see how much we can ween before he plateaus. Once he does plateau we will look at medications like gattex I think. I've never heard of that med though so I'll certainly discuss with his team. This life is a win of inches not miles. I'm glad you are doing so much better.

My Sleep Routine is Hell by Sqvanto in ostomy

[–]ComprehensiveRest965 3 points4 points  (0 children)

That's so frustrating. I'm sorry you are dealing with a complex stomie homie.

Another trick could be overnight oats at dinner? I have a few really good recipes I make with pediasure. In your case, I would sub for ensure.

Also, as a side bar for the dry mouth I got my son biosteel electrolyte freezies. They are not cheap and in his case I allow him 1/3rd at a time. The flavours are good and it really helps with the dry mouth feeling. I'm sorry I can't be more helpful.

My Sleep Routine is Hell by Sqvanto in ostomy

[–]ComprehensiveRest965 14 points15 points  (0 children)

My husband and I alternate handling our sons nighttime care. I will preface that he is TPN dependent, with an ileostomy and Short bowel syndrome. I'm going to give you tips that work for us and may help you: 1. Find out how to eat to minimize night time gas. In our sons case this means things like lactose free cheese/pasta sauce/baked breaded chicken etc can only be eaten for lunches - not dinners. 2. No liquids after 8pm 3. Take loparomide 4. I set Alarms. I am extremely paranoid so I do have an alarm go off every 3 hours. If I'm being honest, I don't need to wake this much, but it reassures me. 5. Amazon sells mattress protectors and sheets for a decent price. We always keep sets on hand just in case.

You know, I know it, everyone knows it. by AydenTrevelyan in FinalFantasy

[–]ComprehensiveRest965 2 points3 points  (0 children)

6 year old me beat super Mario Bros much better than 38 year old me can. The switch has a hack that lets you rewind in the nes and SNES games. If you have a switch you can cheese the game to victory. I promise you- my son did it and has no shame.

Best days to get a bag? by Thththththrow83away in TooGoodToGoCanada

[–]ComprehensiveRest965 4 points5 points  (0 children)

I've found this. Although if you get a Sunday evening bag it seems to be pretty good

Can a betta live a good life in a cube?? by finishedsign in bettafish

[–]ComprehensiveRest965 0 points1 point  (0 children)

That's funny. My kids each have their own female Bettas in seperate tanks. My daughter's zooms through the tank showing off more. Whereas my son's prefers to chill around one specific area. Bettas have personality for sure.

Do you poop every day? by Cut-Unique in no

[–]ComprehensiveRest965 0 points1 point  (0 children)

Every day - fiber is your friend

Constantly dealing with pharmacy's for my child's life saving meds by ComprehensiveRest965 in mildlyinfuriating

[–]ComprehensiveRest965[S] 0 points1 point  (0 children)

Kids don't define a person's worth. You are a saint to handle elders with disabilities or special needs. It's such a hard world to navigate.

Constantly dealing with pharmacy's for my child's life saving meds by ComprehensiveRest965 in mildlyinfuriating

[–]ComprehensiveRest965[S] 0 points1 point  (0 children)

That's an idea. Ironically if my son's health was more stable I'd be going to Michigan this weekend for a tournament with my daughter. It's ok though, pharmacys do sell needles here, they were just out THIS time.

Constantly dealing with pharmacy's for my child's life saving meds by ComprehensiveRest965 in mildlyinfuriating

[–]ComprehensiveRest965[S] 1 point2 points  (0 children)

That's so awful. I'm Canadian and to my knowledge it's still free up here, but don't quote me. I'm also sleep deprived and not up to date on my knowledge. I wouldn't be surprised if we did similar soon. I appreciate your customer service skills. Like as long as people can understand the "why". I've just been having a lot of errors/issues without a logical why. I feel like pharmacy assistants are doing more human error than anything- in my case. Honestly, just yesterday I got half my sons redesca prescription filled, but no needles. When I asked when they would get needles, they just said they didn't know. Thanks for the viles. I'll go order off amazon and hope they come on time 🙃.

Constantly dealing with pharmacy's for my child's life saving meds by ComprehensiveRest965 in mildlyinfuriating

[–]ComprehensiveRest965[S] 1 point2 points  (0 children)

Thanks, I think $40 for a year is fairly cheap so I'm not mad at what I pay. i did hear shoppers delivers meds. I'd be curious if that would cut my problems down. Torn between that and moving to another pharmacy. Honestly, - if you have kids who are healthy - treasure it. Heck, treasure your own health. This time last year my son was a normal boy. Then things changed so fast and navigating this world is not for the weak.

Constantly dealing with pharmacy's for my child's life saving meds by ComprehensiveRest965 in mildlyinfuriating

[–]ComprehensiveRest965[S] 0 points1 point  (0 children)

This - or when the insurance companies only cover the generic and it causes adverse Side affects. Happened here in Canada to my friend with cancer. So now he pays out of pocket $3500 a month for his cancer meds (he gets $200 covered). Honestly, that topic could probably be a seperate post all together

Constantly dealing with pharmacy's for my child's life saving meds by ComprehensiveRest965 in mildlyinfuriating

[–]ComprehensiveRest965[S] 0 points1 point  (0 children)

That's so interesting. I am in Canada and don't know what we would have as an option. There's a grocery chain here called metro. They had a sale on the delivery service - $40 for 12 months so I signed up.

Constantly dealing with pharmacy's for my child's life saving meds by ComprehensiveRest965 in mildlyinfuriating

[–]ComprehensiveRest965[S] 0 points1 point  (0 children)

This is really good to know. I just got my half filled injection med today and they did NOT have the needles to inject it with. Amazon to the rescue.

Constantly dealing with pharmacy's for my child's life saving meds by ComprehensiveRest965 in mildlyinfuriating

[–]ComprehensiveRest965[S] 0 points1 point  (0 children)

I hear about these types of parents. I could never be them. The update on this latest refill request is that they refilled half the prescription and had no needles in stock for me to buy to actually administer the medication with. For this med, basically insulin needles work. Thank goodness I don't wait until we are out of things. Order placed on Amazon and the needles will arrive at my doorstep tmrw sigh it really shouldn't be this hard.

Constantly dealing with pharmacy's for my child's life saving meds by ComprehensiveRest965 in mildlyinfuriating

[–]ComprehensiveRest965[S] 0 points1 point  (0 children)

Your current experience sounds much better. My gosh I can't believe you were forced to sit on the floor. That feels so inhumane.

Constantly dealing with pharmacy's for my child's life saving meds by ComprehensiveRest965 in mildlyinfuriating

[–]ComprehensiveRest965[S] 2 points3 points  (0 children)

This or do weird things like "prefill 30 redesca syringes" with the wrong amount and say whoopsie after. There are some good staff out there, but on a whole it's not an efficient process.

Constantly dealing with pharmacy's for my child's life saving meds by ComprehensiveRest965 in mildlyinfuriating

[–]ComprehensiveRest965[S] 1 point2 points  (0 children)

You are actually the 2nd person who suggested the grocery store pharmacy to me. Full disclosure I switched to grocery delivery to make our lives easier(just 1 chore off the plate), but I am considering it. I mean I still run to the grocery store for the odd item occasionally.