A Facebook Post from my Mother-In-Law

FIL’s health is declining rapidly and he is being sucked in by the terrible-ness of his ALS in distressing ways. ALS usually only affects muscular function, leaving the afflicted fully aware but unable to control body movement. Rarely though, it also can have an effect on brain function and will cause frontal lobe dementia. There are indications (nothing empirically proven) that ALS with a psychological dimension has a much faster progression. This is what FIL has. He is already on a feeding tube as he is unable to swallow. You can not understand his speech. He will be getting a breathing apparatus sometime within the next few weeks as well as a special type of vest that will help him clear the secretions in his lungs since he is no longer able to cough on his own. He shuffles around since he doesn’t seem able to really pick up his feet properly to walk anymore. And he has mood swings. He gets frustrated and angry easily (understandably) but he will also randomly giggle at inappropriate things. He doesn’t seem to grasp what is happening to him. We had to fight with him to get him to stop working. MIL had to hide his keys so he wouldn’t go driving off somewhere. She’s going through the process to be named his guardian.

Thanksgiving was bittersweet.

There were 12 of us total. My Mom, The Zen Master, Princess Punk, The Peach and me, plus The Zen Master’s sister (we’ll just refer to her as SIL), her three kids aged 4, 10 and 12 (I think?), MIL and FIL. Oh and The Boy (Princess Punk’s boyfriend) was there as well.

We made WAY too much food. A 22lb turkey, stuffing, gravy, spinach soup, maple pecan sweet potatoes, cornbread pudding, brussel sprouts, a veritable vat of macaroni and cheese and fresh-made rolls plus 4 pies for dessert (2 pumpkin an apple and a pecan). Princess Punk and My Mom made the turkey, Princess Punk made the apple pie and I did pretty much everything else. It was quite the spread.

And we all got to sit together at the table as a family. FIL sat with us even though he couldn’t eat, and he enjoyed the time with us, especially with all his grandkids together in one place. This  was likely to be his last Thanksgiving. MIL was angry. Not at anyone in particular, just “stages of grief” kind of anger at the unfairness of it all. It was a blessing to all be together. I did miss my own father a bit though.

Anyway. This was all to lead in to MIL’s Facebook post this afternoon

As my Beloved and I face our ultimate challenge, I share a prayer with family and friends given to the Life Force in whatever form your perception takes. I ask those who are willing to say the words when they think of us, or read them once aloud as you find them. As I say them, I think of those of you facing similar challenges. You are in my heart daily.MIL

Finances are finally getting under control. Princess Punk is in much better control of the D-Monster. My Mom is much more stable. The Peach is a pain in my ass but a joy nonetheless.

Yesterday The Zen Master’s father was diagnosed with ALS.

Boom.

And just like that…

I don’t even know what else to say.

Take THAT D-Monster!

A1C is down to 8.5!

A little ways to go from our goal of 7, but still…

Kiss my ass Diabetes.

My “Where the eff have I been?” post, Part I – The D-Monster

Where have I been you ask?

Right here. All along. Just… Not HERE.

This summer has been… Challenging.

We spent much of the summer trying to get The D-Monster under control. We’ve still got a ways to go, but I am so proud of her. She is truly being compliant and working hard at maintaining a healthy blood sugar. The D-Monster however, is a bastard and Princess Punk is now experiencing lows on a daily basis. She was 38 during practice last week. TWICE. Like she tested and she was 38 and she had her 15 grams of carbohydrates and waited 15 minutes and tested again and she was STILL 38. At 38, she can barely walk, yet her coach still had to take her off the field because she kept playing. She’s proud about making Varsity and even more excited about starting, but she is continuing to try to impress her coach so he keeps playing her and as a result she plays through the nausea and shakiness that comes with the lows. So now I get to worry about her passing out or having a seizure or something because her sugar gets too low and she’s too hard-headed to stop playing. Fortunately, her coach is on the ball and noticed she wasn’t doing too well (she got pale and uncoordinated) but it took her another 15 minutes to get into the 80’s. She was okay by the time she got home. But then she had another low overnight. 54 this time and she couldn’t even get out of bed. Like, literally, unable to physically get up out of bed.

But… At least now that she is compliant with testing and covering her food, we have a better idea how much insulin she needs and when. Here is a kind of breakdown of what she has to deal with on any given day. I’ll start off simple.

  • Bg-Blood glucose. This is the number that reflects the number of milligrams per deciliter of sugar that is in her blood stream (and not getting into her cells where it’s needed). Our goal is anywhere from 70-120
  • Test– A Bg check. Princess Punk pricks her finger with a lancet and squeezes a tiny drop of blood onto a tiny little strip inserted into her meter. The meter will show a Bg reading within about 3 seconds. It also sends the reading to the pump via RF or something.
  • A1C– Hemoglobin A1C. A blood test that correlates to an approximately 3 month average of blood sugars. Non-diabetics are under 6. American Diabetes Association considers 7.5 fairly good control for a Type 1 Diabetic. Currently the Princess is hovering around 9.3.
  • Low– Bg below 70. Princess Punk has to stop whatever it is she is doing and have 15g of fast acting carbs. Juice or sugar tabs are preferable. Then she has to wait 15 minutes and test again. If she’s still below 70, she has to do it again (15g of carbs and 15 minutes to re-check)
  • High– Bg above 120. add insulin. See correction below.
  • Basal– A constant flow of fast-acting insulin
  • Bolus– An extra “boost” boost of insulin to administer when consuming carbs or when a Bg reads over the target range
  • The Pump– A nifty device that gives The Princess her basal and calculates and delivers boluses as well.
  • Infusion set– a little piece of plastic that is attached to a cannula that goes into Princess Punk’s skin (site). Usually an arm or leg. She doesn’t like using her stomach or butt. The little piece of plastic is attached to a (removable) piece of tubing that is attached to an insulin reservoir in her pump. That way she can remove the pump and tubing (showers, sports and swimming) without having to pull the site out of her flesh and redo it later. She’s supposed to change her site every other day. Not so much.
  • Ratio– the number of grams of carbs for each unit of insulin she takes. Because The D-Monster is an asshole, the amount of insulin she needs throughout the day varies. For example, her ratio first thing in the morning is around 5. Meaning that for every 5 grams of carbs she eats, she takes a unit of insulin. Her ratio at dinnertime is 6. We also have to make adjustments when she has her period and when she is playing soccer (or basketball in another month or so).
  • Correction– Complicated. a correction is what she needs when her blood sugar is too high. If she tests and gets a high, she will bolus 1 unit of insulin for every 12 mg/dl her Bg is over 120. Example… Princess Punk tests her sugar and gets a 220. That is 100 mg/dl of sugar in her blood that shouldn’t be there. So we take the 100 and divide by 12 and get… Crap. Math. Umm… 8.3333333333333. So she will do a bolus on her pump with 8.3 units of insulin in the hopes that her Bg will come down. Thank God for the pump. When she was on shots, we had to carry around a calculator to figure out how much insulin to give her. Not so fun when sitting in a restaurant in a tight booth trying to figure out how much to bolus for a heap of French fries and a strawberry lemonade combined with a Bg of 223, not to mention rounding it to the nearest half-unit. The pump can deliver in increments as small as 1/10 of a unit whereas shots go to a half unit and only if you have the right kind of delivery device (refillable pen vs. disposable pen vs. syringes). Oh and the needles present a problem too. Nothing like carrying a sharps container in your purse. Now she just presses a couple of buttons and she’s all set to eat.
  • Lantus– long-acting insulin. Normally if you have a pump, you just use your basal instead of the Lantus pen (kind of like an Epi-Pen but reusable). Princess Punk has to take off her pump (remove the tubing from the site) for several hours a day during sports. She can’t play or shower or swim with the pump on. Since she’s not getting her basal during that time period, her Bg was going through the roof during practices and games and whenever she went in the pool. To avoid this, we lowered her basal from the pump to a very small amount (basically just enough to keep the tubing from getting clogged) and then she takes a shot of Lantus before bed so her baseline is covered for a full 24 hours, regardless of whether she is wearing the pump or not. She still has to bolus on the pump for highs and for carbs.

Confused yet? Try this…

The other night, Princess Punk went to practice and came home around 5. Her site had gotten ripped out during a scrimmage so she had been unable to re-attach her pump and had to put in a new infusion set. She tested and was high at dinner so she did a correction along with the bolus for her meal. We must have miscalculated the carbs or the ratio because her Bg was 45. She looked a little gray and her hands were shaking. She had some juice, but 15 minutes later she was still low. She had some more juice and was finally in the 90’s. Then she took her Lantus at bedtime. Since we figured we had miscalculated at dinnertime, we dropped her Lantus down a few units so she wouldn’t have another low overnight. Of course, the next day she got her period and spent the whole day high with Bg averaging around 230. We gave her a temporary basal of 130% of normal to counteract the highs.

This is an example of why her A1C is still messed up even though now she’s compliant.

Got it?

Nah, we still don’t either.

 

Wow… Too Long…

So yes, it’s been a ridiculously long time. Like, ri-DONK-u-lous as my supervisor is apt to say.

And I am composing a “Where the eff have I been” post currently, but today, I first want to say…

HAPPY BIRTHDAY PRINCESS PUNK!

16 years ago today I became a mom for the first time. I was 20. I was clueless. I was terrified. And here I was with this tiny little angry potato (seriously, that’s what she looked like… newborn babies are not generally cute) that I didn’t know what to do with and yet loved with every ounce of my being. She was red. And angry. And just as clueless as I was.

Princess Punk has had a lot of obstacles in her life. I never should have gotten pregnant in the first place. Wait… That came out weird. What I meant… I’ve had poly-cystic ovarian syndrome (PCOS) since puberty. I got my period 4 times a year, if that. It’s why we went through fertility treatments to get The Peach. So for me to have an “oops” pregnancy at 19 was actually kind of a miracle. When The Zen Master and I went in for our consultation for the fertility study, the nurse who interviewed us was genuinely surprised that I already had a child. She said that the chances of me conceiving without help would have been ridiculously low. But she got here.

Then, she ended up in the hospital on day 5 with severe dehydration, failure to thrive and an enlarged heart because I listened to the Nazi lactation nurse and refused to give her a bottle. What neither of us knew is that, due to wicked hormonal imbalances (i.e. PCOS), my milk would never come in, despite every effort to the contrary. So my little Princess nearly starved to death (quite literally) before she’d ever really had a chance at life. She rebounded quickly on formula and I got to wear this ridiculous contraption taped to my chest so she could still nurse while actually getting formula. But she made it.

I was unmedicated, undermedicated or poorly medicated throughout the first 5 years of Princess Punk’s life. As a result I had 2 suicide attempts and ended up hospitalized 3 times. Princess Punk was placed in my parents’ custody for some time and we shared custody for several years. When they moved here to VT, I stayed in FL to finish college and she came here to live with them. The Sperm Donor rarely saw her and when he did, he denied she was his and was downright mean to her. I recall once, when she was an infant, sitting in her car seat, he put his face about 6″ away from hers and yelled, just to make her cry. Asshole. And I myself was not a great mother to her in the beginning. I’d drop her off with various people and go out and smoke pot and drink with “my boys” while I left her at her paternal grandmother’s house (Sperm Donor’s mom) or some other really inappropriate place. Or just leave her with my parents while I did my own thing.  She has had to deal with a lot of issues surrounding those formative years where I was kinda just a sucky mom. But she did it.

And then The D-Monster reared it’s massively ugly head. And since then she’s struggled with ignorance and illness and high blood sugar and low blood sugar and medical releases and being turned away from the local summer camp because “they didn’t have the capacity to care for a child with uncontrolled diabetes.” That one still pisses me off. She’s 100 times better with compliance since her surgery got canceled and she decided she finally is ready to stop letting the D-Monster control her life. She still struggles. But she gets it.

Princess Punk blew my mind from day one. She continues to do so every day, in both good ways and bad. She has grown to become an amazing young woman. She is intelligent, kind, talented, beautiful, strong and brave. Even a diagnosis of Type 1 Diabetes has not stopped her from doing well in school, playing on Varsity Soccer (yes, starting on varsity as a sophomore), being a caring friend, a loving big sister and an amazing daughter and granddaughter. She is a force of nature, unwavering and unstoppable in her achieving her dreams. I am SO proud of you babygirl, Happy Birthday!

Oh, and BTW Princess Punk…

I Love you Forever,

I Like you For Always,

Even When You’re All Grown Up,

My Baby You’ll Be.

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Even if you don’t pray

I’m asking for your prayers.

So obviously, it’s been awhile. On my last post, a few weeks ago, I revealed that Snarky Girl (formerly Newbie… still a work in progress) and Crazy Girl are pregnant. Ok… WERE pregnant. Snarky Girl still remains with child, but Crazy Girl? She had her baby at 2:38am on Friday April 10th. At an estimated 24 weeks. She was less than 2lb at birth. And so far, she’s making it. Crazy Girl had messaged me Thursday night…

Ugh have you ever felt so bloated that you couldn’t even feel the baby move but a few times?

Or should I totally freak and head to the hospital?

lol

I literally feel like I’m going to pop

:/

I told her to call the doctor’s office. I frequently made use of the on-call service when pregnant with The Peach as I was high risk and totally neurotic.

She decided to wait it out since she was at work. She went home and took a shower and the cramps started. It got worse and she thinks she might have passed her mucous plug, at which point she woke up her man and had him take her to the local hospital. The little one. With no NICU or anything.

She thought it was already over.

Yes. A boulder. The size of a truck. In the interstate.

Yes. A boulder. The size of a truck. In the interstate.

They found a heartbeat strong and healthy and she was shocked. Then even more shocked when the doctor checked her and told her the baby was coming. Now. And she pushed. And the doc caught Itty-Bitty with one hand on the bed. And the baby cried. Not loud but she cried. Which is amazing. And then they were able to intubate her and get her lungs fully inflated. And they kept her stable for the 3 hours it took for the NICU transport team from UVM Medical Center to assemble to take Itty Bitty to a real NICU. 3 hours, you say? Yes. Because on Aril 10th, here in VT, it was sleeting and the roads were terrifyingly slippery and slick. And on the way to UVM, there was a boulder on the interstate. A boulder. A fucking boulder blocking one lane of the highway and slowing traffic to a crawl.

And yet she made it. Kicking and punching and pink with a strong heartbeat. And now she’s even breathing on her own as much as one so little can.

Itty-Bitty's diaper

Itty-Bitty’s diaper

But she’s tiny. I haven’t been able to see her and I won’t be able to for months since only parents are allowed in NICU and she’ll be there until her due date. Which should have been August. But all Crazy Girl kept saying was, “She’s just so tiny.”

And Crazy Girl and her man… Doing okay. In shock still I think, but hopeful. I told Crazy Girl that only she could have a pregnancy so short. She only was aware of the pregnancy for about 6 weeks. In labor (at least the painful part) for 2 hours.

Now though… Now is where the long journey starts. Because even after the first two critical weeks, there’s a long road ahead for Itty-Bitty. There’s so many things that can happen and she’s so fragile and teeny and God I am so scared for her.

So pray for her. Pray for Itty-Bitty and Crazy Girl and Her Man. Even if you don’t believe in prayer.

Just Pray.

A break for once

 

How sad is it that I finally have a break, only because The Peach has the flu (or something flu-like)…

She sits here in the bed next to me, watching preschool songs on YouTube because she doesn’t actually want to do much else.

My Peach hasn’t gotten really sick since she was a baby. Even now, with this her temperature is only hovering around 100. The puking last night was epic unfortunately. Our downstairs toilet is currently sitting in the hall, waiting for the spackle to dry from the huge hole the plumbers had to cut into the wall. Only at that point will it be possible to put it back in and have more than one functioning bathroom. Not complaining. I know we have more than a lot of people. Just explaining why The Peach spent 20 minutes in the kitchen last night throwing up, first all over the floor, then into a bowl. After about 5 minutes, The Zen Master and I stood there, alternately patting her back and emptying out the bowl between each round of retching. After about 10 minutes, The Peach’s seemingly neverending puke became interspersed with profound weeping and pitiful requests to wipe her mouth, and ultimately, to take off her shirt. I mean seriously, who wants to throw up for 20 minutes. When she was all done, she stood in the kitchen, crying, while I rubbed her back and The Zen Master finished cleaning up the mess.

She then went upstairs with her daddy, reluctantly, as she wanted to stay with me. I was cooking dinner. Gross right? I promise, no puke in the mac n’ cheese.

Ok, only after I had thoroughly convinced her that I was unavailable. Then she settled for dad...

Ok, only after I had thoroughly convinced her that I was unavailable. Then she settled for dad…

After awhile, she insisted on coming downstairs to tell My Mom what happened. My Mom apparently has some killer headphones because she had not heard a bit of the disgusting cacophony that had transpired directly outside of her door.

“Mima. I pruked. I pruuuuked in the kitchen.”

“You what honey?

“I PRUKED”

“Ummmm.”

“She puked. In the kitchen. A lot.”

“Ohhhh…”

“I pruked all ober de fwoor. It was scawy. I don’t wike to pruke. I don’t hab a feber.” (She did have a fever, but was, for some reason, insisting that she didn’t)

“Oh, I’m sorry honey. (then to me) She looks like crap.”

Then I took her back to our room. And called out to work for the next day (that’d be today). My Mom is perfectly capable of caring for a sick child, but she has no car. If something were to happen, I’d rather there be access to a car so she could take The Peach to the doctor. Besides, I wanted to be home with her. Like I said, The Peach hasn’t been sick with more than a 100.4 fever for 24 hours since… ever.

snotShe’s a bit better. She had some toast this morning. She’s hungry, but it’s hard to tell a 3-year-old that you don’t want her to eat gogurt because she might puke and mommy really doesn’t want to clean up vomit with a strawberry smell from her bedsheets. Ew. Now I’m gonna barf. Plus she has this wet, croup-y sounding cough and is maintaining a low-grade fever. Plus she’s all… Not-Peach-Like. She’s quiet and cranky and all she wants to do is snuggle. Which is fine by me although it will probably lead to my own sickness in a few days. Joy. Oh, and the snot-faucet is on. But her nose hurts, so she is phenomenally resistant to The Snot Nazi. Every time I come near her with a tissue, it becomes a mini-wrestling match to see if I can actually wipe her nose before she flips her head away, leaving a trail of snot-slime on my arm, the blanket, her shirt or whatever else she might be in close proximity of. I’m pretty sure she got snot on Fairy Dog last night.

 

 

 

You know what? Sick kids are gross. I’m just waiting for The Zen Master to get it now.MjAxMy0yNjhiZWMyYjkzYjYxYzM3

 

 

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