7 Quick Takes: CPAP FAQ, Ranting at the School Nurse, and Other Merriment

7 Quick Takes

— 1 —

Ranting at the school nurse. Lest this be added to the “reasons not to homeschool send your kids to public school EVER” list by my current troll reader, I enjoy a really good relationship with Daniel’s school overall, and this problem wouldn’t exist if the school district hadn’t cut the funding for school nurses to the point that they are covering 3 schools on average. (Teachers at this school nurse’s other campuses and at Daniel’s elementary school has explained that this individual is “special.”)

School Nurse,

For some odd reason, you couldn’t be bothered to actually get my young prince’s individual health plan written/signed in SEPTEMBER, so I now have to remind you again that the only information you need on his G-tube is DON’T [EXPLETIVE] TOUCH IT, per the request of the General Surgery nurses at Seattle Children’s Hospital because they don’t want the integrity of the stoma compromised. That sucker is being held in place by a water-filled balloon UNDER HIS SKIN, and it is not coming out without that bubble being drained or someone pulling pretty darn hard on it with needle-nosed pliers.

If it does for some odd reason fall out, CALL ME DIRECTLY ON MY CELL PHONE AT 867-5309 (not at the first random number you see) as my sweet babu will probably be in a buttload of pain (again, that thing is NOT falling out on its own) and there will probably be damage to the stoma that requires an ER visit to Seattle Children’s. If you can’t reach me, call my parents (whose numbers you have) and they will get in touch with me PDQ. Again, DON’T [EXPLETIVE] TOUCH MY CHILD’S G-TUBE OR YOU WILL BE IN DEEP FECES.

Snuggles,
jen

— 2 —

The back storyregarding the above take. Dumb@$$ School Nurse (“DSN” for short) decided to call the first number their eyes came upon, and it was my parents’ landline. (I live with them, so it’s the back-up number. However, EVERY piece of school paperwork contains the words “call Jen on her cell phone at 867-5309“, and DSN seems to be the only person who has ever ignored that.) Thankfully, I happened to be home, but DSN managed to get my dad first… who was not amused by some random person calling and asking seemingly personal information about my kid. DSN finally explained WHY he was calling, and Dad called me to the phone.

When I picked it up, DSN apologized for “upsetting my husband”.

I rolled my eyes and told him, in a voice dripping with saccharine, that the gruff gentleman who answered the phone was my FATHER, and that he was not amused to get a call from a strange person asking seemingly personal information about his grandson. When I got off the phone (after giving him a bunch of information that he ALREADY HAS in various documents and emails), I told Dad that DSN thought he was my husband. Thankfully, Dad found some humor in THAT, even if I was spitting fire at DSN’s idiocy.

/stomps off to fix the student health plan for my critter AGAIN

— 3 —

CPAP Take #1. Kelly (our hostess with the mostest) asked to see a selfie of me with the CPAP mask on, and I’m obliging because I live to make Kelly happy. 😀

CPAP selfie!

— 4 —

CPAP Take #2. Kelly asked to see my mask, so here it is along with the strapping on it that holds it to my face. (The white things in the bottom corners are the things that fasten the mask to the strapping, and they attach to the mask magnetically.) My nose rests on the top of the mask on top of a hole that allows me to breathe through it. Otherwise, I breathe through my mouth. I opted for the full-face mask instead of the nasal pillows (similar to a nasal cannula but with a fatter base) because I couldn’t breathe well with them in. (They force air into your nose, which works well if you’re a nose breather… which I am not.)

Not shown in the second picture (because I’m dangling the mask from) it is the clear tubing that feeds the hot air into the mask, so I took the third picture to show the mask tubing and how everything is connected. The whitish stuff attached to the mask is rubbery and flexible tubing, and it goes on top of my head. The greyish tubing is a little firmer and what brings the heated moist air pressure into the mask framework. Most masks have the greying tubing coming out of the front. Mine comes out of the tubing on the top of my head.(I apologize for the quality of the pics — I’m taking them on my webcam in not-great light because it’s late at night.) I sleep on my side usually with the greyish tubing trailing behind me. If I’m on my back, it comes out the top of the rubbery thing and trails off my pillow and to my right where my machine is.

CPAP Mask
CPAP Strapping
CPAP Mask Framework

— 5 —

CPAP Take #3. Kelly asked about my machine, so here are some pictures of it. (Our email conversations are FUN! We also both believe in educating people on scary health issues, so I’m happy to answer questions.) Mine is made by ResMed and adjusts the pressure going into my mask automatically. It also has a modem in it which sends data to a website that my doctor, my home health person, and probably the Illuminati can see. The rule is that I have to be using my CPAP for at least 4 hours a day in order for insurance to continue to pay for it (it’s usually 8 hours for me and up to 12 if I go back to sleep once Daniel is off to school).

Here are the front and back. (I blacked out any personally-identifying information.) The clear thing at the right side is a removable reservoir where I put distilled water to make the air moist. I clean it out and refill it every 2-3 days. The tubing that brings the air to my mask attaches in the back.

The front of the machine.
The back of the machine.

— 6 —

CPAP Take #4. Kelly asked what it feels like to have it on. It was a little weird at first, and I’m really glad they had me try out face masks in the hospital before they attached all the wires to me during my alien abduction sleep study so that I would know which one felt most comfortable for me. When I put it on, I breathe into it to start it (provided it’s plugged in) and it feels warm and moist around my face. It’s been good because using it forces me to breathe deeply, and that deep breathing helps me get sleepy quicker. I tend to sleep better and deeper, which helps with the daytime sleepiness.

It doesn’t make an annoying sound — it’s designed to be white noise. And yes, my little ball of black fury has investigated it and rolled his panther cub eyes because Mama bats him back from it every time he tries to eat the tubing. #housepantherproblems #meanmama #mustbiteallthethings

— 7 —

The Superb Owl. (Yes, that spelling was intentional.) I honestly don’t know who to root for this weekend. I can’t root for the Lambs Rams because they’re from LA, and I hate on southern California teams as a moral rule. I can’t root for the Patriots because I take great joy in seeing Tom Brady lose. (The 49’ers of the 1980’s and early 1990’s are the best football team in history, y’all. C/S.)

I’ll probably just go on SuperBowl.Com and watch the commercials or something. I mean, isn’t the Superb Owl is just fabulous commercials with annoying interludes of football and obnoxious Halftime entertainment? #stateyourunpopularopinion

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.

7 Quick Takes: What’s Been Going On Edition

7 Quick Takes

— 1 —

December 18. Daniel had an appointment at the Center for Pediatric Dentistry in Seattle. Verdict: there will be a sedated exam where they can do x-rays, an exam, and a cleaning as well as fix anything that needs to be fixed. This is pretty much exactly what I expected. The dental resident we saw was incredibly good, and I think he’ll be an amazing pediatric dentist when he is done training.

— 2 —

December 19. We had a hearing loss clinic appointment at Seattle Children’s. Some idiot (me) forgot to give Daniel his Adderall before we left, and this made being stuck with him in an exam room for FOUR HOURS (!!!) really fun. We saw speech therapists, an otolaryngologist, an educational specialist, and a genetic counselor.

The genetic counselor was the only one telling us something we didn’t already know — she explained the genetic abnormality that causes his autism, ADHD, and learning disability… and it turns out that Seattle Children’s has a clinic for it. The providers there hadn’t ever seen Daniel’s genetic report before that day, so the genetic counselor was like a kid in a candy store because there were SOOOOOO many cool things in it, enough that she is still studying it and figuring things out. Woohoo.

Also… the genetic abnormality is inherited from a parent (70%) or present when the baby is forming (30%). In other words, all those who claim that vaccines cause autism can shut your pieholes because YOUR ARGUMENT IS INVALID.

— 3 —

December 22. My evil twin, The Girl (his wife), and my nephew Braden arrived. Braden is still cute and a total flirt. He also didn’t want to let his parents sleep and got mouthy (as only a 6 month old can) at midnight, letting them know about his displeasure.

— 4 —

December 23. The evil twin woke up with his eyes red and drippy. He hauled butt to Urgent Care while I was at church, and the nice PA diagnosed him with “ninja pink eye”. Thus began his regimen of having to put nasty ointment in his eyes, wash his hands every time he touched his face, and apply enough hand sanitizer that his hands started to look as bad as mine. Because I am a nice sister, I dug through my collection of hand gels and found the only one that wasn’t pink to give to him. (My favorite scent is Apple and the Walgreens version is either neon green or pink.)

— 5 —

December 24. My little cherub woke up with a rash spreading on his face that my mom thought might be impetigo. Because I am an obedient daughter (and because it was my mommy’s birthday), I tossed clothes on and headed to the closest Urgent Care with the shortest wait time. I was remarking to the triage nurse that Daniel hates being in small rooms (as to why he was flipping out), and she asked if we wanted to wait in the waiting area that has floor-to-ceiling windows and an open plan. (I almost kissed her feet.) The nice nurse practitioner in the elf onesie (no, I am not kidding) said it was *PROBABLY* not impetigo, but the treatment she wanted to do would take care of it if it was. We now have goop to put on his face three times a day until the 3rd. Fun.

Once I got home, got a feed into my sweet child, and got his antibiotics, I made my mama a batch of these cookies as her birthday cake. Because I am awesome. Also… I had to be at church at 6:30 for choir and was going to be ditching her birthday dinner, so they were my apology. (Dicing the rings of sweetened dried pineapples with Mom’s kitchen scissors also probably worked off some time from Purgatory.)

Church was awesome… of course.

— 6 —

December 25. We had 15 people at the house for an early Christmas dinner. T’was epic… with some amazing ham, potatoes, some veggie dishes that I avoided, and two kinds of cheesecake for dessert (white chocolate peppermint for the win!). The Evil Twin, The Girl, and The Nephew headed home.

Mom and I decided to just stare at walls for a few hours… because lots of people + introverts = brain 404.

— 7 —

December 27. The kidlet and I were invited to go to my fairy godmother’s house for lunch with my parents, but I decided to skip it because her house isn’t Daniel-friendly and I needed a day of quiet in between two doctor days. (We had his ADHD appointment yesterday morning with his regular pediatrician and tomorrow is sleep medicine in Bellevue.) We got me coffee, wrote thank-you notes, went to the grocery store, and had a chill day. No regrets on skipping lunch at all!

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.

7 Quick Takes: G-Tube Questions Edition

7 Quick Takes

Daniel has had his G-tube for four months now, so I thought I would answer some of the questions I have gotten from people about it.

— 1 —

How easy is it to change the tube? I have only done one change (November 9th, three months post-surgery), and I had a nurse giving me instructions. Having said that, it took maybe 5 minutes at most. It is held in place with a balloon under the skin that has 6 ml of water in it. To change it, we draw the water out with a syringe, pull the tube out, put a new tube in (that has been lubricated), and then refill the balloon with 6 ml of new water. Insurance only pays for four tubes per year, so this is a quarterly occurrence at most.

— 2 —

What does it look like? This is the closed version.

Daniel's G-tube

This is open:

Daniel's G-tube open.

This is with the feeding extension in place:

Daniel's G-tube with the feeding extension in place.

— 3 —

Does it gross you out to have to work with it? Not really. After 9 1/2 years of being Daniel’s mom, I’m used to bodily fluids. The only really gross part (for me, at least) is when scabby material builds up around it (stomach contents and stuff), and scabs don’t freak me out. Even if it did gross me out, I’d have to suck it up because I’m his parent and have to take care of him.

— 4 —

Do your parents help at all? Mom helps me by holding his hands when I’m having to put ointment on it or when I have to clean around the opening on his abdomen, but I do everything else otherwise. From about Day 2 onward, I had to do feedings in the hospital with nurses watching and helping if needed, so I’m used to it and maybe have to interact with the tube for 30 seconds per feeding.

If I were to know that I would be gone for a couple days for surgery or something, Mom would learn how to do stuff but her preference is that he would take his calories by mouth. She’d probably give him milk with heavy whipping cream in it a couple times a day and whatever else he wanted to eat. (He likes strong cheeses like Swiss or sharp cheddar.)

— 5 —

Does he object to you working with it? He doesn’t like having it manipulated too much (he’s non-verbal so I don’t know if it’s painful or if it’s a weird sensation), but he’s fine with me attaching the feeding extension to it. Cleaning around it is probably not comfortable, but he’s getting better about it.

— 6 —

What do you give him through his tube? There are parents who blend their own foods and places online where you can buy blenderized diet stuff, but I stick to the Boost Kids Essentials 1.5 stuff we were given in the hospital. Insurance pays for everything (his feed bags, feeding extensions, syringes, formula, etc.) so I just call the Home Health department at Seattle Children’s Hospital when I need more of something. You can get the formula on Amazon.Com as well and a case of it (27 juice boxes) costs around $60.

If I have to, I can also give him medication through his tube. The only medication of his that doesn’t work that way is his Adderall ER which has to be given by mouth. (The beads in the capsule can’t be pulverized and the capsule is what does the extended release.) Otherwise, I use a syringe for liquid meds and crush pills up to mix in water to give with the syringe. There’s even a special port on the feeding extension for medication.

— 7 —

How does the food get into the tube? Some people do syringe feeds, and others use gravity bags (the bag hangs above the opening and you control the droplet rate, letting gravity do the work). Seattle Children’s Hospital has a pump that we rent on a monthly basis (insurance deals with them directly so I have no idea what the rent is per month), and we use that. It’s not complicated to use, and I had to learn how to use it without problems before they discharged us from the hospital. (Home Health came and worked with me for an hour before the first hands-on feeding I did.) The formula gets poured into a bolus (the plastic IV bag) and the particular feed bag we use is manufactured for the pump, so it has some special tubing attached that fits into the pump. I can prime it with my fingers if I have to (and do a little bit that way to get the air out of the bolus), but I usually just hold down the prime button on the pump to get it all the way through the tubing before I attach it to Daniel.

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.

7 Quick Takes: Why I’m Tired Edition

7 Quick Takes

— 1 —

It’s my Friday. I work Monday, Wednesday, and Thursday. It was a pretty intense week because finals have been released and students are panicking. I can’t help any of them other than pointing out what they are allowed to use if they get stuck. Thankfully, one of the instructors was present on campus today and her office is right off my classroom. She chose to give one person a lot of help, which is great — it’s her final, not mine.

— 2 —

My child is communicating in shrieks this week. We’re really hoping the bio-behavioral therapy people get us in sooner than later.

— 3 —

I’m not sleeping well. Between the cold messing with my arthritis and having an IBS flare-up this week, sleep has eluded me.

— 4 —

I’ve been trying to get some internship hours. My internship paperwork is due tomorrow. Thankfully, I got all of my hours done and submitted my paperwork this afternoon.

— 5 —

My bed keeps breaking. IKEA has crappy bed design, and the slats keep jumping out of track.

— 6 —

I’ve been worrying about one of my students. She was having contractions and coughing up a lung last week. She sounded better on Tuesday, and they induced her today. Thankfully, her daughter is here and they are doing very well. 🙂

— 7 —

I keep having things in the mornings. Kiddo has a hearing aid fitting tomorrow morning and then I have Finance Committee. I have to be out the door at 7:30 a.m. Oh freaking joy.

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.

7 Quick Takes: Things That Make Me Stabby Edition

7 Quick Takes

— 1 —

Special needs blogging Kelly talked posed the question of why you should start a special needs blog. I’ve actually done some.

— 2 —

Things that are making me stabby #1. I’m seeing more and more blogs who have pop-ups advertising their newsletters. It’s obnoxious, and most of them are not blogs that are big enough to really need one. Not to mention, stuff like that belongs on a sidebar and there are a ton of widgets that let you do it.

— 3 —

Things that are making me stabby #2. I’m hearing more and more from parents about “getting” their children into college. 20 years ago when I was applying, *I* did everything except maybe sign certain parts of the application if they needed a signature of a parent and pay the application fees. I filled out all my paperwork, got the letters of recommendation, wrote the essays, etc. All of my classmates did too.

When parents “get” their children into college, I wind up with students who are functionally useless in tutoring and who have no clue as to how to talk to an instructor, plan out their schedule, or do much of anything adult-related. Please, I beg you, MAKE YOUR KIDS DO THEIR OWN APPLICATIONS, FILL OUT THEIR OWN RESIDENTIAL LIFE INFORMATION, AND FILL OUT THEIR OWN FAFSAS. My friends who are instructors, professors, res life people, and college staff concur.

— 4 —

Things that are making me stabby #3. Daniel has a whine that sounds like a dog whining… and he’s been doing it all day.

My child, I love you but KNOCK IT OFF!!!!!

— 5 —

Things that are making me stabby #4. My favorite subreddit just had an explosion and a bunch of people who were banned for legit reasons are now dancing on the wreckage. I’m really hoping the mods ban them across every possible sub for the crap they’re pulling in the wake of this.

— 6 —

Things that make me stabby #6. I’ve had a couple students come in and try to make me troubleshoot things with the testing software on their laptops. When I’ve told them that they need to use the desktops in the lab, they’ve had hissy fits and told me that their instructor TOLD them to come to me and make me fix it.

Witch, please. Do you think your instructor and I don’t discuss these things?!?!? I know full well that your instructor told you to use the computers in the classroom in which you are sitting because those computers are less likely to trip up the testing software than your laptop is. That’s been what instructors have told students for the two years I’ve been here. Oh and by the way? You could have also FINISHED your assignment in the time you just spent yelling at me.

— 7 —

Things that make me stabby #6. People who send you an admin question and then ping you every 5 minutes to see if you’ve spoken with the other admins. It’s like a complete surprise that it *MIGHT* take me 24 hours to get back to them.

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.

The Simple Woman’s Daybook: October 8, 2018

For Today… October 8, 2018

Simple Woman's Daybook

Looking out my window… dark. It rained all day.

I am thinking… about my drop-in tutoring hours today. I dealt with cranky SNAP assessments and tutoring a class I didn’t enjoy taking. I love my job, but it was a tiring day.

I am thankful… for the tutoring students who didn’t leave their SNAP assessments until the last minute or who didn’t make me deal with SNAP at all today. (Can you tell what I spent most of my drop-in hours doing today?)

One of my favorite things… students using “please” and “thank-you” and respecting my boundaries on when I will answer questions outside of drop-in tutoring hours.

I am wearing… jammies.

I am creating… plot things for NaNo.

I am listening to… silence.

I am hoping… to get as much Keychamp done tomorrow as possible.

I am learning… how much I suck at typing with fingers on the correct keys.

In my kitchen… Greek chicken from Trader Joe’s.

In the school room… Daniel loves school. School loves Daniel.

Post Script… Some brain bleach.

Shared Quote… “The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd.” — Bertrand Russell

Hosted by The Simple Woman.

The Simple Woman’s Daybook: September 25, 2018

For Today… September 25, 2018

Simple Woman's Daybook

Looking out my window… sunny.

I am thinking… about the changes I’m having to make to my degree plan based on the appointment with the Autism Center for Daniel yesterday.

I am thankful… to not be doing my Final Project for my degree(s) this quarter.

One of my favorite things… Sleepy black kitties. 🙂

I am wearing…a tie-dyed shirt and black capris.

I am creating… child support case paperwork.

I am listening to… Daniel playing on his tablet.

I am hoping… to get the child support order mess fixed quickly.

I am learning… about how to file all the necessary papers in Washington.

In my kitchen… heated up some chicken shu mai from Trader Joe’s.

In the school room… Daniel loves school.

Post Script… this is a useful reddit thread.

Shared Quote… “Lighthouses don’t go running all over an island looking for boats to save; They just stand there shining.” Anne Lamott

Hosted by The Simple Woman.