Balancing the needs of your children (T1D and not)

@TiaG, I cannot even imagine how difficult it must be to deal with the upheavals you are confronting. The baby, of course, is the hardest—but everything else, each one, would be enough to make things a lot harder. And, with Samson, given his age, you have the hardest D burden of all, a very young child.

We only have two children. Last Spring, my college son broke his foot, at school (3,000 miles from home), right before finals. He was scheduled to go on an internship that summer that would require daily driving. My wife flew off to CA for 10 days to help him out. Then I flew to Austin to help him move in, figured out with him how to deal with his internship, and worked multiple hours a day with him for the rest of summer. In both cases, one of us was largely unavailable to my T1D son. He was not so brittle last summer on Lantus, but there is no doubt that his control was somewhat impacted from the regular routines we have at home.

Harold was discussing earlier that he does all he can to share his time between his children, but that he spends 75% of his time on Liam. I have come to accept the fact that the proportion will hold true for us too. But I cannot renounce caring for my other boy when he needs help either. I think, in the end, the amount of time we spend on D care, however much it is, also needs to be in an equation with all the other tasks of our lives—the most important ones being our other children, but also everything else: moving, remodeling, work…

Both my wife and I have made career choices following my son’s D diagnosis that allow us to spend more time on D and on my son. But we have not curtailed ALL work, and ALL other tasks, and certainly not our other son, although we are ready to spend more time on my T1D son, because it is the nature of the beast.

As for your decision to breastfeed your newborn, my opinion has absolutely no importance, but, FYI, I support your analysis 100%. We did the same with both of our kids btw: they were breastfed for about 7 months each, even when my wife was traveling it lot. She would pump on the road, and we had a stash of frozen breastmilk that I would use when she was gone. That did not stop my second son from getting D of course. But I figure at worst it can’t harm, and at best it will significantly reinforce immunity to many possible sources of future health danger.

Unfortunately, I don’t have any tip to give you. We spend all of the time we can on our T1D son. When our other son needs us, we do whatever he needs, within reason, and our T1D’s care gets worse for a while. I feel guilty about it but my reason tells me this is the right thing to do.

The main issue, imho, is your psyche. You are doing the best you can in very challenging circumstances. Operationally, you cannot do any better. You have taken very rational decisions (of course, given who you are!). But you are permanently tired and recently gave birth, and Samson is facing daily challenges. Naturally, you feel depressed and guilty. Alleviating that is, I think, more important than other issues.

FYI, our recent events had led me to feel the same, btw—but I am aware that it is the wrong thing :slight_smile:

Would you like me to fly over for a week and help out to give you a little respite?

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I’m so glad that @Michel has chimed in on this thread. When I was reading both of your current situations, I was thinking that they had a lot in common – even though they appear very different on the surface. You are both super parents, and I think your children will grow up to appreciate what an investment you have made into their future.

I seriously wanted to offer to do that for both of you. Breaks my heart when friends are hurting. :broken_heart:

@TiaG I am sorry that it is so rough. Things that would’ve seemed exciting, have turned out to be unexpectedly, temporarily burdensome (leaving the old place! new house! time at home with baby! bigger yard!). I think that in the long run you are making all of the right decisions for your family and it will eventually smooth out. Keep hanging on!

It sounds like some things are working really well – like school being a continued spot of success in Sampson’s BG numbers. Having grandma as a spare set of hands - maybe she can begin to improve with your help or learn to ignore your husband in the middle of the night? And maybe the alarm/receiver in a metal bowl of spare change to clang around in would help your husband at 2am? EH sleeps through his and claims he doesn’t. :wink: We all need sleep, so it’s understandable that everybody at your house is a little frazzled! I wish I could send you some sleep to enjoy.

I do send positive thoughts your way, and I hope that your Internet is up and working soon. Sampson will forgive you, and probably enjoy having a little brother to be the boss of down the road. :slight_smile:

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I’m going to be arrogant and say sternly “Stop beating yourself up.” BG of 133 corresponds with an A1C around 6, which is nothing less than a great result. Ask your endo, but in my layperson’s opinion you are taking excellent care of your child by achieving a BG average of 133 with SD of 52. We all have been told that lower and flatter are better, but you are already well into the region of good health and diminishing returns from further tightening, so you should be celebrating your truly amazing good results. Striving for continuous improvement is fine, but don’t lose sight of the great result you have achieved at the current levels. Be kind to yourself.

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I agree with @bkh and all the other comments, though I’m not a parent so can’t give specific recommendations. We all strive for tight control on this site, but short periods of less control are not going to be disastrous long-term. My two-week stats are worse than the stats you posted. It seems a lot of us here are having difficulties with BG management at the moment. I know it’s frustrating, but things will calm down eventually and you can focus more on diabetes control. Incidentally, when I use a Cozmo it had a home screen that could have a customized message on it. Mine was, “This too shall pass.”

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Thanks @All for your kind thoughts, and @bkh and @Jen for the sense of perspective. I’ve been swamped so havent had a chance to reply.
@Michel

Would you like me to fly over for a week and help out to give you a little respite?

That is such a kind offer. I see you guys are also pretty overwhelmed with Kaelen’s BGs lately so it’s an extra kind thought!

You guys have a lot on your plate now and you need to sleep. But in a strange way I can see how looking after someone else’s blood sugar for a while might still be a mini vacation – at least from all the emotional baggage that we parents carry to the job.

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UPDATE: So we went to the endocrinologist yesterday and Samson’s A1C was 6.5, despite the 2 months of crummy BG control. So the number itself I’m happy with, although I try not to think too much about how many lows may have gotten him there. (6.5 is higher than his average BG would suggest but that’s been the case for several A1Cs now with Samson, so I’m not surprised).

As to @bkh’s statement that this type of control is a great result – well I think you’re right that the end result seems really good – but the way the days feel is night and day between a 52 SD and a 40 SD. I would take an A1C of 6.8 with an SD of 40 over an A1C of 6.0 and an SD of 60 just in terms of quality of life.

We feel out of control most days, and Samson has at least a few scary low episodes a week that make us slightly freaked out, where it sort of flits in the back of my mind “I hope I know where the glucagon is.” Or situations that just feel very in the dark, where there’s no data all night long and I wake up and realize Mitch has not been monitoring, and we test him and he’s 39 – how long was he that low? What happened in the meantime? Or he’s been in the 300s all night and I see no corrections and openAPS was off. Was his pump site dislodged? Is he going to wake up in DKA?

We are nowhere near @Michel’s level of tight control, and for instance I will happily let Samson ride in the 160s all night if it means a night interrupted only by the baby. But even with our wider latitude, it’s just that the day-to-day feels more like a precarious Rube-Goldberg machine that could all topple over at any moment. While we try to ride the good times and aim for tighter control when we feel in control, our baseline goals are much more modest: a) keep him safe from deadly low blood sugar b) keep him safe from DKA. The fact that those types of situations could conceivably have occurred in the past few months is what makes me feel the guilt I think. And ironically being less vigilant about Samson’s numbers in some ways contributes to that because we have more of these close-shave situations and near-emergencies.

But @ClaudnDaye Daye is right: the guilt is counter productive and the best way to ultimately regain a sense of control is to not dwell on past “failures” and just keep moving forward.

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Tia, it is worth pointing out that many of us were overwhelmed by just having two children close together, without any diabetes management. So in my book, you are a superwoman!

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That’s a concrete issue that you could focus on to get a big payoff. There must be some way to make the alerts impossible to ignore, because the weak link here seems to be alerts that are not acted upon. I know that for myself, when I go below 60 it is because the CGM alerted at 85, but I was busy or distracted and didn’t take the glucose. Hmmm, maybe I should try changing my Dex alert profile from soft to attentive, especially at night.

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This is our issue currently also…we’ve been hearing the alerts for so long now that they’re coming part of my dreams and I just sleep through them. It’s a horrible, and scary feeling to wake up after the 5th alert and they’re either super low, or super high. There was a thread earlier, although I can’t find it anymore…perhaps someone can re-link it…where some device could be purchased that hooks up and either turns on lights, radios, or something like that to help in the waking up part. I am at the stage now where I need to invest in something like this in my house.

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yes, this is a huge issue. The real weak link is data connectivity. First we had no internet connection, but that’s been solved. The second issue is making sure the phone is with him at all times and that our openaPs rig can communicate with his pump at home. At school he wears his phone in a pocket on his back so it’s always transmitting data, but our receiver just died and so we’ve been leaving it out of his pocket and just looking at it. But then he runs from room to room. In our old apartment it was small enough that one rig in the closet could cover the whole house, and that the phone could get bluetooth signals pretty much everywhere. Now we need to remember to follow him with the phone every single spot. WE need a better system and may have to put the phone back in his pocket, but it is nice for him to have some time without a bunch of stuff to carry around. I’m wondering if there’s a better way to do this, some kind of signal boosting maybe?

The second big issue is that we think he may have scar tissue from Dexcom sites on his arm, leading to flakier data and shorter sensor lives, bigger data blackouts etc. We will have no data for hours on end sometimes, and even when Mitch wakes up and sees it, he may test once and then decide he’ll just do sensor change in the morning and take a chance that data will return. Then he’s sort of mentally told himself to ignore the alarms so even if the data doesn’t come back for hours, he’s sleeping through the subsequent alarms.

So one solution there is to try new sites. So far we’ve been reluctant to disrupt his routines this way as the sites on his belly are typically more painful. But we will do this if we keep getting such huge data blackouts.

Also we have a smart Wifi siren somewhere, but I think it’s been misplaced in the move. That also helped us a lot in the past house. I’m wondering if there are smart systems that can call a landline. We now have one and I think that would be more difficult to ignore than just the transient sirens.

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Didn’t someone on TuD train their dog to respond to Dexcom alarms? Maybe you can combine this issue with the Get A Dog thread, and train a dog to bark/wake you up when the Dex goes off… Or in @ClaudnDaye’s case, I guess it would need to be a DexCat, so maybe you can train one to expect tuna or something good when it goes it off, so it will wake you up for its treat, haha.

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WE have a cat. She’s basically the awesomest, most beautiful cat in the world (no offense to all you other cats out there!) but I don’t think she’s up to the task. :rofl:

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Here is the post:
sound_activated_alarm

It’s $55. Here is the link to buy.

http://www.harriscomm.com/sonic-alert-traditional-system-uss-360-universal-sound-transmitter.html

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Hmm, the one you linked only notifies by flashing lights or by vibration. Is there one that makes loud sounds?? I sleep with my eyes covered (have to have perfect darkness when I sleep) and vibrations aren’t possible (or wouldn’t be heard) due to where the cgm/phones are placed in our bedroom.

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Actually the device doesn’t do anything by itself except turn on the outlet. You plug it into the wall, and the Dexcom alarm triggers it to turn it on.

Whatever you want to notify you is plugged into the device. You can plug a vacuum cleaner into it. Or a radio cranked all the way up. Or a blender filled with marbles.

Anything you want to plug into it.

The Dexcom alarm turns on the device outlet, and then whatever is plugged into the device outlet would automatically be turned on.

The only thing you need to do is adjust the sensitivity of the device so that the Dexcom alarm turns it on, and find some really loud electrical device to plug into it.

They have an optional device you can buy in addition to it that shakes your bed (I guess for hearing impaired). But I think the bed shaker is kinda expensive

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Awesome! Thanks for the clarification!

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We have the D-Link smart wifi siren

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That’s used with Nightscout, though, right? We don’t use xDrip or Nightscout atm.

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it’s with IFTTT… not sure but there might be a way to set it up without NightScout

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@TiaG, after you discussed it last time I looked for an IFTTT trigger w Dexcom but could not find one. So I am waiting until we succeed in working with Nightscout.