7 Quick Takes: Feeding Tube Edition

7 Quick Takes

— 1 —

Fun with science. This morning, I was hurriedly prepping Daniel’s morning feed and forgot to take the plastic tip off the tubing while I was priming it. The pressure from the feeding pump shot it across the kitchen at my dad. Thankfully, he was amused.

— 2 —

My “helper”. Minion likes to supervise the prep process… sitting next to the parts while I’m prepping them. Did I mention that I do the prep on the kitchen table and that we have a “no kittens on the table” policy? Yep… totally enforced. A step in my prep that gets repeated frequently is “remove the kitten from the work area” and the kitten is thankfully small enough that I can lift him with one hand. (Currently, the little monster is at my feet.)

— 3 —

Lenten meal idea. This looks pretty amazing.

— 4 —

Black Cat Appreciation Day. Black Cat Appreciation Day is today. Minion is, unfortunately, feeling unappreciated because he’s in my room for “reflection time” because he was beating up Jethro. Sorry Little Panther, we don’t want another vet bill for an abscess on Jethro. Not to mention, he’d have to wear an Elizabethan collar and we would laugh at him.

— 5 —

To my Catholic readers. I know some of you are really struggling, especially since some of you know the priests that have been named. I’m keeping you in my prayers.

— 6 —

Done. I just submitted my last assignment for my summer class. Given that I currently have 100% in the class, I’m happy as long as I get a 50% or higher on the assignment so that I end up with a flat A. (The college doesn’t do A-plusses.) I mean, having a solid 100% in the class would be an ego booster, but I’m happy as long as I keep my 3.99 GPA.

— 7 —

Another blog. I’m putting a blog together for G-tube things. Would anyone like to see what a feeding entails? Let me know.

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

The Simple Woman’s Daybook: August 14, 2018

For Today… August 14, 2018

Simple Woman's Daybook

Looking out my window… dark. It’s late and I’m fighting insomnia.

I am thinking… about Daniel’s g-tube, the situation going on with my church, and the fact that I’m hungry.

I am thankful… for so many things:

  • Daniel’s g-tube surgery going well
  • The amount of support I got at Seattle Children’sas a parent
  • That my kiddo wasn’t the sickest one in the unit
  • Being home in my own bed with clean sheets and clean jammies
  • Daniel’s tube feedings going well today/yesterday
  • My silly black monster who is berserking around my room and bouncing off the walls

One of my favorite things… the softness of Minion’s fur.

I am wearing… jammies.

I am creating… a blog to talk about g-tube adventures

I am listening to… parts of Fauré’s Requiem that I sang 15 years ago with St. Paul’s choir.

I am hoping… all of the kiddo’s feeds go well tomorrow.

I am learning… how to ensure the kiddo gets his full feed every time.

In my kitchen… I did a baked potato tonight that was lovely.

In the school room… Daniel goes back to school the Wednesday after Labor Day.

Post Script… something on depression, worship, and liturgy from a former colleague of Jon’s.

Shared Quote… “I’m no longer a slave to fear. I am a child of God.” — No Longer Slaves from Bethel Music.

A moment from my day… this offering from the late Rich Mullins.

Hosted by The Simple Woman.

7 Quick Takes: Seattle Children’s Hospital Edition

7 Quick Takes

— 1 —

The sitch. For any new readers out there, my son Daniel has food issues related to autism and prematurity and was scaring the pants off of his gastroenterologists and their nutritionist with weight loss and being around 20 lbs underweight. For the sake of making sure he doesn’t go into organ failure, the decision was made to put in a G-tube so that we have a way to get the necessary calories and nutrition into him. (I’ve just distilled close to 4 months of testing and deliberation into a paragraph, so believe me when I say that this was not a minor decision.)

— 2 —

The plan. He was admitted to Seattle Children’s Hospital two weekends ago for nutrition prior to surgery with the plan that they would nourish him inpatient for a week prior to surgery. His gastroenterology MD was positive that an NG tube would be able to stay in and that they could *TOTALLY* get nutrition in that way. I disagreed and got overruled.

Let’s just say I was right and my precious sweetling removed the tube with both hands restrained. We got to stay for another day and a half while they tried to figure out a Plan B. Our attending physician finally looked at what I was getting into him by mouth and said, “Let’s just discharge him and let Jen do this at home.”

(And yes, his gastroenterologist MD did apologize to me. She is classy and I’m less cross with her now.)

— 3 —

Wednesday. Surgery was Wednesday morning and we ended up with a different surgeon than was planned. This is who we were supposed to have. This is who we ended up having because he had the space on his schedule. (For those who don’t want to click the links: We were supposed to have just an awesome general surgeon and ended up with THE FREAKING DIVISION CHIEF FOR TRANSPLANTATION WHO SPEAKS NATIONALLY AND INTERNATIONALLY AT BIG CONFERENCES doing Daniel’s minor procedure.)

Surgery went well (they let me come in and help with him while they were getting him to sleep so I have a lovely selfie of me all suited up!) and we settled into the post-surgery wing.

Anesthesia selfie!

— 4 —

How things are going. My beastling is doing amazingly well and we started doing feeds through the tube yesterday. Yesterday’s nurse started explaining the process and how to do things to me. Today’s nurse is having me do the feeds after training this morning. I have one feed of mine under my belt and will be doing the rest of them with supervision until discharge. He isn’t showing signs of refeeding syndrome so we got to double the feed amount today. If he tolerates tomorrow’s upping, we’ll be discharged on Sunday. Otherwise, we’ll be discharged when we can do all of the feeds without him vomiting them up or having refeeding issues.

We have a bed sitter with us who is making sure he doesn’t remove his IV or the G-tube and he has been good… so far. He did almost have a situation today where he was connected to the feeding pump and he tried to get out of bed which would have taken some tubes out accidentally, but we prevented it.

— 5 —

“Things I love here” take #1 The staff is ALLLLLLLLLL about the kids and families. They support their families really well and have an entire resource center on the 7th floor with washers/dryers, computers, and just about anything parents need when being here.

The doctors and nurses do an amazing job of interacting with the kids. All the residents are here for pediatrics so they are all focused on learning how to work with the kids. Daniel is finally used to doctors again (my deepest thanks to his pediatrician Annalee Paul M.D. at Skagit Regional Clinics for getting him on better terms with doctors checking him out) but I’ve watched the residents talk to Daniel and tell him what they’re going to do before they do it. The nurses are awesome as well. They advocate for us to the doctors and have done a great job of helping me figure out how to work with Daniel’s G-tube and how to use the feeding pump.

— 6 —

“Things I love here” take #2. Security is serious here. EVERY person who walks through the door gets their state-sponsored ID scanned and a badge sticker made that identifies your reason for being there. (The hospital is a huge building with skybridges and one zone of it is the outpatient clinics. Because it is connected, people can get from one place to another and they need to make sure that only certain people can get to certain places.) Parents and caretakers who have inpatient kids have color-coded lanyards with their badge inside of it. If I’m outside Daniel’s room, my badge is required to be on. If I forget it, they will print me a new name badge sticker that is temporary until I get back to the room, but I have to have something identifying me.

It’s incredibly strict, but I love it because people can’t just walk in from the street.

— 7 —

“Things I love here” take #3. I’d be lying if I said I didn’t like having three Starbucks a short walk away. When we were inpatient a few weeks ago, the elevator to one of them was next to Daniel’s unit so I could walk down a short hallway and take the elevator down to the 24-hour one next to the ER. I have a little more of a walk to the closer one here, but I love being able to get my coffee fix without having to go outside or change out of my jammies!

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

The Simple Woman’s Daybook: August 6, 2018

For Today… August 6, 2018

Simple Woman's Daybook

Looking out my window… sunny. It’s in the 80’s and I’m in my dark room with the shades drawn to cool things down.

I am thinking… about Daniel’s G-tube surgery on Wednesday morning.

I am thankful… for my favorite vet happening to be at the clinic today for a staff meeting and crashing Minion’s appointment with my other favorite vet. It was wonderful watching Dr. Fischer feeding Greenies to my little demon one by one out of her hand while Dr. Matt examined him and did the shots. (I cannot say enough positive things about Chuckanut Valley Veterinary Clinic. They caught Jethro’s thyroid tumors in time to treat them, gave Homer another week of life, and love my little black monster so much that he has groupies when he comes in for vet visits.)

One of my favorite things… my black beast. I’ll miss him while I’m down at Seattle Children’s with Daniel.

I am wearing… jammies. Clothes today were a charcoal shirt from Old Navy (I have three) and jeans capris from Kohl’s. I have such a short inseam that my capris are more like clam diggers on me. #shortpeopleproblems

I am creating… a packing list for the hospital.

I am reading… Inspired: Slaying Giants, Walking on Water, and Loving the Bible Again by Rachel Held Evans

I am hoping… all goes well with Daniel’s surgery on Wednesday.

I am learning… all about G-tubes.

In my kitchen… I had a turkey florentine meatball from Haggen for dinner tonight.

In the school room… one month until school starts. Daniel can’t wait.

Post Script… the page for a US agent for International Pen Friends is here. I’ve been a member for close to 30 years and I cannot recommend them highly enough for anyone who wants to find their kids a pen pal or who wants to find one for themselves.

Shared Quote… “The Psalms are, in a sense, God’s way of holding space for us. They invite us to rejoice, wrestle, cry, complain, offer thanks, and shout obscenities before our Maker without self-consciousness and without fear.” ? Rachel Held Evans, Inspired: Slaying Giants, Walking on Water, and Loving the Bible Again

A moment from my day… One of my favorite choirs doing one of my favorite Bach pieces.

Hosted by The Simple Woman.

7 Quick Takes: G-Tube Prep Edition

7 Quick Takes

— 1 —

G-tube take #1. We saw Daniel’s nutritionist on Monday. He had lost about 1 lb in the last two weeks, but that could also be as a result of clearing out some constipation. (Pleasant topic of conversation, I know.) It was a smaller drop than the last time so no immediate hospitalization, but it created more of an impetus to get moving on the G-tube. R will be doing his inpatient nutrition care, so at least I know part of my team already.

— 2 —

G-tube take #2. We met the anesthesiologist (love her!) and surgeon (really love her!) on Tuesday. We like both of them. The only problem: the surgeon wants him to be inpatient for a week prior to up his nutrition to give his incision a better chance of healing. That throws a wrench in my life, but not a huge one. I’m not taking any in-person classes this summer and I’ve lived on hospital units with this little monster before, so it’s doable. The only downside is missing Minion a whole lot because I obviously can’t take him with me.

— 3 —

G-tube take #3. Daniel’s gastroenterologist (Dr. No) called yesterday and wanted to admit him THAT AFTERNOON. My response: “No.” When I was questioned as to why I would question her ruling, I explained that I had a doctor’s appointment today (Thursday) that I had been waiting for 6 months and that would impact my ability to function if I didn’t keep it. Dr. No also explained that they would be starting out with him doing nutrition by N-G tube, which is just about the stupidest idea on the planet… which has been pointed out by me, the physician assistant working with Dr. No, Daniel’s nutritionist R, Daniel’s surgeon, Daniel’s regular pediatrician, and just about anybody who has spent more than 15 minutes with him on a meh day.

I may or may not have excavated a new rear sphincter opening for her during our final conversation yesterday (yes, there were several — I don’t think she likes me right now and I couldn’t care less), at which point I **FINALLY** found out that he’ll be admitted on Saturday afternoon and where I get to go for this. (Seattle Children’s is YUGE… bigly even!) She also told me that they *sigh* will have a back-up plan (a PICC line) and enumerated the risks of said plan. (While she was pontificating, I was rolling my eyes so hard at the phone that they fell into the floor of my car because I am familiar with PICC lines… especially since my kid HAD ONE FOR TWO MONTHS in the NICU and my former father-in-law had one for several years.)

I should point out that Dr. No is not incompetent — she’s quite brilliant — but she doesn’t quite get autism well and doesn’t understand that my child is more of a cranky 3-4 year old than a 9 year old, so he isn’t going to be cooperative and leave his N-G tube alone.

— 4 —

MY appointment. I finally got my neurology consult today and it was… intense. My neurologist is lovely (though very high energy and intense) and gave me credit for having a mind (yay!). She’s doubling my migraine preventative, sending me to sleep medicine (I very likely have sleep apnea), putting me on magnesium, and a few other things. My only criticism is that she told me that my stress level would improve if I meditated… which makes me stabby because my stress level would improve if I wasn’t largely managing my medically interesting kiddo with special needs on my own while also trying to finish my degree and be a functional adult.

— 5 —

Duuuuuuude… I just got the news that my dear friend Richard has been elected as Moderator of the United Church of Canada. Having known him for 16 years through blogging, I can honestly say that there is no better person for the job. Congrats, my friend. I am so incredibly proud of you.

— 6 —

Huh. Does anyone else remember all the McDonaldLand commercials? There were toys too apparently.

— 7 —

My earworm. I’m feeling like Armenian choral music today.

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

7 Quick Takes: Cat on a Window Screen Edition

7 Quick Takes

— 1 —

Let the blogger cage fight begin! Bonnie is doing the Sheenazing Awards again this year after a hiatus of several years and is taking nominations until July 21st.

— 2 —

Sigh… I learned a new thing last night: my window screen cannot sustain the weight of a 4 lb kitten. *glares at Minion*

— 3 —

This explains a lot. Arabic has been irritating me and this is probably why. I’m also not loving Memrise so I will probably wait until the course on Duolingo is done being developed.

— 4 —

WANT! Mint chocolate is one of my weaknesses, so these are on my WANT(!!!) List.

— 5 —

Daniel update. His upper G-I x-ray came back normal so next on the agenda will be the nutrition appointment on the 23rd and surgeon consult/pre-anesthesia appointment on the 24th.

— 6 —

For historical clothing lovers… I recommend this YouTube playlist.

— 7 —

Whoa. This is amazing.

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

7 Quick Takes: I Need A Nap Badly Edition

7 Quick Takes

— 1 —

Seattle Children’s Appointment #1. I’ve touched in the last 6 weeks on Daniel deciding to stop eating. Well… he decided to start puking up his meds as well. This was not a medicine reaction but a behavioral one (gotta love autism!) and to keep from having to clean carpets nightly or mop floors twice a day, we had to start limiting what he could have several hours before meds were taken. That drops calories significantly and he had lost a couple pounds by Monday when we got to the hospital for the nutritionist appointment. R, his nutritionist, had kittens and went off to consult with one of the gastroenterologists in clinic about whether or not to admit him. My mom was watching me in order to see if I was about to have a panic attack. I was just sitting there mentally calculating what I needed her to bring back down to me from home. (Seattle Children’s is a good hour away without traffic and there would have been some hideous rush hour traffic involved.)

The good news: the gastroenterologist declined to admit him and we were sent home with our marching orders and warnings of what refeeding syndrome looks like. Wheeeeeeeeeeeeeeeeee!!! Our G-I PA of Awesomeness has gotten us an expedited pre-anesthesia appointment/general surgery consult for a G-tube and we had imaging stuff done for that today.

— 2 —

ESY. ESY (extended school year — it’s summer school for kiddos with special needs) started this week. Daniel had to miss Thursday for his audiology appointment and I felt bad about that because he LOVESLOVESLOVES school.

— 3 —

Minion update. Minion continues to be completely and utterly psycho in a kittenish way. He likes to climb chairs, walk across tables, sit on laptops, and Mom has even found him in her bathroom cabinet! (The Greenies are kept in there.) He even decided to void his adoption contract and follow me outside yesterday. (Part of his adoption contract was that he would remain an indoor kitty.) Apparently, he forgot to read that clause in the contract and decided to take a stroll through the dahlias and the grass. Mama is allergic to grass and black kittens (oops!) so he had to be bathed to keep me from turning into a giant hive. (We’ve known about the cat allergy as long as we’ve known that I have a touch allergy to grass. I get shots for both weekly and my previous allergist even used to ask about how my cats were doing.)

Beastling had a vet appointment this morning and our vet techs and the vet of the day were happy to see him again. (Apparently, they used to take him out of his enclosure and play with him when he was at the vet waiting to be adopted.) He is now almost 4 lbs of black furry insanity and doing well. He got two shots and we’re just watching him super closely for a reaction.

— 4 —

Summer class update. I had my resume rough draft due this week in addition to an assignment where we were coming up with phrases to describe aspects of things employers want. I was sweating both assignments and just got the grades back: 100% on each of them. I was stunned! Along with my perfect score on my assignment from last week, I have 100% in the class.

— 5 —

Seattle Children’s Appointment #2 This one was for Audiology and we had to be at Seattle Children’s at 9… which meant leaving the house at 6:45 a.m. so that we had time to grab coffee. (Rush hour in Seattle is worse than any traffic I’ve seen in LA, the Bay Area, or Sacramento.) The audiologist had an assistant who went in and helped with Daniel. I had to go in and sit with him after a while because he started getting teary in the anechoic chamber, but he was able to make it through the hearing test. He did show mild hearing loss in one ear and mild/moderate in the other. These results are going to enable us to get him new hearing aids this fall. Mom and I were stunned by how well he did — it was like, “who is this kid?!?!?!?”

— 6 —

Seattle Children’s Appointment #3 This was an upper G-I x-ray to rule out any issues keeping my kiddo from eating. It was another morning where we had to be at Seattle Children’s at 9 and it was also one of those times where my kid had to be NPO after midnight so he didn’t get his ADHD meds until AFTER the x-ray. Oyyyyyy…

Between my mom and the radiology tech holding him in place, the Child Life person showing him Daniel Tiger on an iPad, and me shooting contrast into his mouth, we got it done. Not something I want to repeat any time soon and he’s been out-of-sorts for two days because of the delayed ADHD meds. Gah.

— 7 —

Duolingo update. I’m loving Duolingo and the way it is set up as it is making me feel pretty confident in my Spanish. Because I’m a language geek, I’ve also added French (well… reviewing it) and Irish. (Irish actually makes sense structurally from a French perspective.) I’m trying Arabic through Memrise and not liking it as much.

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