Overnight trips - a vent

[Ratatosk]

Ugh! I signed up for a conference and now DH has to go out of town and I need to leave DS in the care of his grandparents. While we have it down to a routine -- vesting, meds, meals, schooling... My inlaws aren't exactly comfortable with this and need everything written out in detail. My MIL, a retired nursing instructor still gets freaked out over enzymes and worries she gives DS too many if he decides not to finish a snack or dinner. We've been working with DS on identifying and taking his meds, turning on his vest, but he's still not quite there. And there've been a couple occasions when they've watched him in the evening DS was given the wrong nebulized med (tobi) despite me setting aside separately and writing PULMOZYME on the proper vial.

So I sat down with the list of drugs, how to operate the vest complete with pdfs from the vest manual, throw in the nightly homework routine and I've got 5!!!! Five flippin pages of stuff, which really torques me off because I really, really just wish I could send ds off for an overnight stay with just the clothes on his back. Stomping feet, full out tantrum going on here. Done with vent.

 

[Aboveallislove]

I wish I knew the appropriate Emoitcon for a knowing bittersweet smile of how so much of this sucks and how some days I just want "normal." Just imagine though what it would be if you typed out everything you did re ordering meds, scheduling appointments, submitting medical reimbursements! Hugs
Love

 

[Rebjane]

I try to keep it as simple as possible. We did a spread sheet with boxes to check off for nebs and meds. I also taught my daughter how to do her nebs so I make it my daughter's responsibility when I am away(as long as she's not sick)...Well, if she was sick I'ld likely cancel anyway. I think it's super stressful for grandparents. They are afraid to make a mistake. My parents have never taken care of my daughter. My sis could do it, no prob but has her own kids. My MIL has done it; but I think it's the things we do to our kids that are hard that make it hard and stressful for the grandparent; like giving yucky tasting meds, forcing them to do treatment and VEST when they should be out just having fun. So Vent away; it does suck.

I also reassure people, that yes even I have made mistakes with my daughter's meds..

maybe somting to make you smile; went to Sam's club today. My list: Huge bottle of Miralax, Huge barrel of pretzels, juice boxes and JUMBO box of toilet paper. I was excited to be stocking up; looked at my daughter and said look at this huge thing of miralax and toilet paper; My daughter with CF rolled her eyes and looked sooo embarrassed. (she's been having belly issues lately; and we went in for a belly xray today)

 

[Ratatosk]

Yeah, I think it's their fear that they're going to screw up and constant questions, reassurances that drive me nuts. Add to that I won't have cell access -- I'm headed to the dark dismal western region of our state and have to rely on a calling card like a darned CAVEMAN!!!

I do divide the meds into breakfast, afterschool and bedtime. So it should be easy.

BTW, do I need to order your daughter a Colon Blow -- poopin' is cool cap?

 

[Rebjane]

I prefer a baseball cap I once saw that said "did you poop today?"

We'll see she's been having issues this month..Now on daily Miralax...

 

[TreasureGoddess]

I think we've all been there, done that and ranted away. I usually fill out a daily notebook with dates/times/things to check off. I have one page with the basic schedule, then a page for each day with the who goes where and when stuff. The medicine schedules are the biggest part. My kiddo is almost 15 yrs old and still I have to give my folks and family the whole routine and list list list and meds labeled, etc. Rant away!!! I've done my share of foot stomping and pouting occasionally too.

 

[Ratatosk]

Actually got a compliment from my MIL. Said she didn't realize how much work went into caring for an 11 year old wcf and couldn't imagine what it must've been like when he was a baby. I was gone 3 days, had no cell service and was only able to call in the early morning late night to check on things. Only two crises...they couldn't find the iPad charger-- the bright green one I placed in the drug box before I left. Fortunately they got ahold of dh who told them where a spare was located at our house.

The other issue was with Nebs. I'd sent a ton of disposables with instructions to change out tubing should she forget to run the condensation out. Well Thursday afternoon she decides to also throw away the elbow which attaches the mask to Nebs. She fished it out of the garbage, but was afraid to use it despite washing and pouring boiling water over it, as she didn't wasn't him to get an infection (geez I must be scary to the retired nursing instructor) so she used mouth pieces. She fretted the rest if the week despite me telling her I've dropped sterilized ones down the filthy garbage disposal and into dirty dishes before.

 

[Rebjane]

Glad it worked out. Sometimes I think when we've been doing this for years, people think we make it look easy. It's our routine; but I would not call it easy; and day in day out can take it's toll.. Your MIL know you are a good mom.

 

[Aboveallislove]

It is always nice to hear, isn't it, even if we know they know...just someone saying wow...that's hard, for some reason really helps me. i had sent a picture of our son typing to my boss to show how well he was doing...he's five and had his hands on the home row of keys...that's what I was focused on...I was oblivious to the fact he had his mask on strapped to his face and vest running and that's what my boss saw and said everyone needs to see that so know what his/your day is. After saying how nice that was, I said but did you see his hands...he's got his fingers on the home row properly, that's why I sent the picture!
so glad the trip went well!