Year: 2017

Sorry, this selfie is in the bathroom at Comet Ping Pong.  Last night, I put on my best pantsuit and went downtown to celebrate the publication of Pantsuit Nation at Politics and Prose downtown.  I went because my friend, Lauren, was selected to be featured in the book.  Her entry was about her daughter, Molly, one of Edda’s Rett Syndrome sisters.  Lauren didn’t have prepared remarks, but she spoke from the heart and then read her post which was originally on Facebook.

A number of contributors were there – writers, photographers, and people whose photos appeared in the book.  The book goes chronologically from the few weeks before the election and then through the election aftermath recording the feelings of everyone who posted on the group.

Here’s the photo of Lauren and Molly.  <3.

We took Edda to the see her surgeon today – Dr. Oetgen. He took a look at her back and described what he’ll do to Edda during the surgery.  Gentle traction will be applied on her head and her legs to lengthen her back and he’ll make an incision down her back and use screws (titanium) and rods (cobalt chrome) to straighten her spine and lengthen her body as he goes with the traction machine.  Some cadaver bone grafts will be inserted too to help the bones grow and fuse together.   The critical decision to be made in Edda’s surgery (based on the way her back is curving) is whether to fuse all the way to her pelvis or to leave a little bit of space between her pelvis and the end of the rod.  If he leaves a little space, there is more mobility in the spine for Edda which will allow her to more easily move, but there is a risk that that part will curve and will require a 2nd surgery in a few years.  The 2nd surgery would be simpler and shorter, they would just extend the rods.  We agreed to leave the little bit of space to give Edda more mobility and risk the 2nd surgery later on.

We got a last set of X-rays…

I’m exchanging exciting texts with Edda’s teacher b/c we are messing with her input and outputs with iron and stool softener.  Poop emoji!

Happy National Nurses Week!  A tradition that I’ve been waiting four years for is to decorate my student scrub top.  I made one of these – I’ll let you guess which one.  I hear there is some sort of competition and I’m hoping to win.

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Second violin lesson of the week.  We are doubling up until the recital.

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Sometimes the sky is beautiful!  This photo doesn’t do it justice.

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The line was too long at the ice cream place, we left without having any.

Edda’s appetite has improved steadily over the weekend and by tonight, Sunday night, both intake and output are as they should be.  We’re spiking her orange just with both Miralax and iron supplements.  Big poop tonight (!) and we are good to go to school tomorrow.  

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Jeremy, now a concerned scientist regarding his flexibility,  is at all moments of the day dreaming about becoming a contortionist so that he can tuck himself into the form of a fish to glide through all the wind resistance while sitting atop his bike.  The first step in doing becoming aerodynamic is to be able to touch his toes which, I have to say, he pretty much can do now.  Though I think this feat involved a long 30 minute routine of stretching each part of his body before attempting this toe touching.

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While he was busy trying to touch his toes, all the following bike related items arrived at the house.

And now I’m the proud half-owner of a bike stand.

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I went with Vince to his violin lesson.  Because I’m good friends with Kelly, his teacher, we spend most of the lesson time chatting and not lesson-ing which I think is OK with Vince who spends the time scratching Inky the dog.  Vince’s recital is the day after Edda’s big surgery and she’s scheduled to be in the ICU that day.  Will he make it to the recital?  The hospital can be either incredibly boring and incredibly exciting (often not in a good way) so we are hoping that it’ll be incredibly boring at the hospital and Vince will be able to make it to recital.

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Vince, today on and off pissed off at me, came into Edda room in the afternoon while I was quilting and Edda was watching TV and asked if he could hang out with us a few moments.  I’m always a little surprised about these request (especially if we’ve spent the day exchanging snarky snarks) and honestly, I’m happy he still seeks us out to hang out with.

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I miss a good camera, I use the iPhone camera all the time now and nothing else, but it’s perpetually unsatisfying to me.  I borrowed an expensive Sony mirrorless full-frame camera from Seth (five years old now) and took these last photos.  I’m not sure it’s the camera that I want – it’s still a little big.

Jeremy is having a love affair with biking.  We talk a lot about bicycles, hamstring flexibility, time trials, power meters, and Strava.  There is always a youtube video playing in the background of some bike race where Jeremy urges me to come over and “take a look at this!”  He’s signing up for week long bike trips, bike weekends and dreaming of the next bicycles he’s going to buy.  It’s good, mostly, until I see how many weekends and summer weeks I’m trying to schedule Edda-care around Jeremy’s excellent biking adventure.  He wants to add days onto business trips to CA to bike in Napa or near Monterrey. Then I start to get snippy and whiney and petulant.  I know it’s not entirely fair, I have my own things I want to do that take time from the family and result in things that are logistically complicated.  Anyways, I start making a fuss about the biking and then he reminded me that his work work (meaning his regular day job) is so frustrating and discouraging to him right now that he needs to divert some optimism and excitement to something else – so that something else is biking.  Then I let him be.  At least until the next time I get irritated.

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Vince made some cheese/corn dip concoction for our dinner party this evening.

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Rachael came over for dinner!  Somehow we talked a lot about summer camp.

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I’ve started on my 2nd quilt.  This one is black to match my mood.  😉

They posted a goofier picture on the Facebook group and I think, true to this cohort’s personality, that it’ll go on the official wall of graduates. I am overcome with this need to put everything down for a few days, to take long naps in a warm patch of sun, to read crime mysteries in which the bad guys get caught and good guys win in the end, to eat simple meals and to sleep 10 hours a night, but it’s not happening and I’m not really sure the next time it will happen.  I say a few days, but I think a week is really the shortest time possible to totally unwind and relax back into a fully calmed person.   No, I do not want to go to Paris, glamping, see the northern lights, fight for a reservation at Pineapple and Pearls, or the exhibit down at the Hirshorn.  I want to rest and reduce my concerns to that of a baby in her mother’s arms – am I warm? am I clean? am I fed? have I napped? have I been hugged?

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Edda stopped eating on Wed night. That was the day I took her to Children’s Hospital for the pre-op consult and a pediatrician there did look at her throat and noted that it was a little red, but nothing significant.  By Thursday night, the poor girl was both constipated (from the iron) and not eating from her sore throat.  Jeremy took her to the doc on Friday and by then, her throat was angry with inflammation and pus.  She stayed home that day and she’s slowly regaining her appetite.  Vince was out with friends on Friday (as a side note, I think I’m being shoved off my pedestal at the most important female in Vince’s life as we speak) and Jeremy made me liver & hard cider for dinner – a dinner that I enjoy, but really not possible to be served to any guest who populates our table most nights of the week.  Edda enjoyed some of the hard cider.  She had about an inch of it before she frowned and told us – this is kind of good and kind of weird at the same time.

My cohort!   I’m not sure I can really say that because I’ve traveled through 5 different classes in the last four years, but this cohort is a fun one.  We had one final poster presentation today (which went fine) and as we were all dressed up in professional attire, they took a class photo.   I loved every minute of it, I never wanted it to end – I met so many great people, I learned so much.  My first bachelor’s degree was all about pressing to the end, trying to ace everything, do everything perfectly, finishing things quickly to get to the next, supposedly better, thing.  It was the right thing to do then, but this time, I really relished all the people & all my clinical experiences – this time I knew I wouldn’t have a chance like this again in this lifetime – how many more times will I be able to be invited to a bar with 40 college kids again?  Never.  (I was invited, but I didn’t go.  Because I still don’t know how to have fun.)

You saw Jimmy Kimmel’s monologue about his about baby?  Who noticed first that there was a problem?  The nurse, of course, who was doing her regular hourly assessment on the baby.  Go nurses!

Jeremy thought that in the last blog, I was insulting the nurse practitioner by not calling her an actual anesthesiologist.  I had to explain to him (and now to you) that I didn’t mean to slight her.  The nurse practitioner was the first person to walk into the room and introduced herself as part of the anesthesia team and that she would be doing the intake questionnaire on Edda.  And my first thought was – YES!  We are going to have a nurse anesthetist do our anesthesia.   I loved her, I wanted her to administer all the methadone/morphine and monitor her breathing and take care of Edda during the 6-7 hour procedure.  So at the end of the 20 minute discussion, I asked, so are you going to be Edda’s anesthesiologist?  And she said, no, I’m not and actually I don’t administer any anesthesia ever, I’m in charge of all the clinic intake for all surgical patients for the anesthesia group.  So the nurse practitioner is actually not an actual anesthesiologist.  So then 15 minutes later, the actual anesthesiologist came in and continued the anesthesia conversation.  When I said the word “actual” I was differentiating between a person who regularly puts people to sleep and wakes them up again vs a person who has never done that and not differentiating between an MD and an RN.

A beautiful day today which is good because I’m anxious.  Today was the day I took Edda downtown to the third to last of her pre-op appointments  – anesthesiology and hospitalist.  This is the only time I needed to go downtown and even though I think I’m prepared for it all emotionally, I am not.  I’ve not been to Children’s on a weekday (my clinicals there were on a weekend), so I walk into the hospital and it’s loud, there are tons of people moving around and there are lots of crying kids.

I am feeling a bit sorry for myself, it was a long day.  We met with two sorts of anesthesiologists – one a nurse practitioner and one an actual anesthesiologist.  Both are asking questions, both are telling me what’s going to happen – I’m not actually sure if I need to know. Two IVs, an arterial line to monitor blood pressure, she’ll be intubated down her throat and she won’t be breathing at all on her own because the pain meds and muscle relaxant drugs will be administered at such a level that her breathing will be depressed and therefore a machine needs to control that.  She’ll be face down which also makes it more difficult to breath.  And because she’s at risk for long QT syndrome, they’ll probably forgo the methadone (longer acting) for pain control during the procedure and go with morphine (shorter acting and therefore more frequent dosing) and also maybe not do the Zofran as an anti nausea med because it could prolong QT.  This careful explanation just makes me more and more anxious. And neither of these two people are going to be actually administering the medications to Edda during surgery, it’ll be one of 40 that rotate through the operation bays and days.  They asked if Edda had loose teeth (which might interfere with the intubation).

Then I met with the hospital pediatrician who’ll be taking care of Edda on the floor (one of four peds assigned, so I’ll likely see her), she’ll be transitioning Edda from the surgical suite to the ICU (hopefully only one night) and then to the ortho floor (hopefully four nights).  She asked about our house – what equipment do we have?  We have: stair lift, bath chair & accessible shower, ramps, accessible van, bed with side rails.  We have everything which will make the case manager’s job simple.  She asked if we have nursing care and I said no (well, except me) and that we wouldn’t qualify for nursing care anyways and she agreed.

Edda likes these bubblers.  I should get her one.  To top it off, I think Edda’s getting Vince and Jeremy’s cold.  She’s having trouble swallowing tonight and is really quiet.  I think her throat is sore, but the pediatrician looked at it in the hospital 12 hours ago and though it did look a tiny bit red (Edda’s been sniffling), but nothing dramatic.

I can not read a book, I can not work, I can not concentrate while I’m at the hospital.  I can only play this particular word game.  I’m afraid it’ll be a week of it during/after the surgery.

I go to Montgomery College to use their track as MCPS has stricter rules about when their track is open to the public and, honestly, the college track is closer to the house.  I don’t park on campus (I have no parking permit), I park on a side street and cut through an apartment complex that has a fence with a door that leads almost straight to the track that is usually open from 5:30 am to 11 pm. There usually isn’t a problem, but I haven’t been to the track in a number of months and today, I find a large bush planted right in front of the gate on the apartment side.  There are also two conflicting signs on the fence, one that says welcome to our tobacco free campus and one that says private property no trespassing.  I think the apartment complex and the college are in a fight.  Anyways, I walked past the bushes to the track where I found a number of community members out walking and jogging including a bunch of very nice people who wanted me to join their Herbalife nutrition club (I politely declined).

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I indulged Vince in another sick day.  My own tendencies (in all things) is to just suck it up and proceed, so if I was as sick as Vince was today, I would have gone to school and done whatever it is I could do because you’d fall behind if you didn’t just go and hear what the teacher said, but I know he feels crappy, so I went against what I would normally do myself and let him sleep in.  But I did (when he was happy on Motrin) make him get a haircut with me.  He said that he thought the Hair Cuttery was a place where only old people when to get their haircut and I reminded him that we were out at noon on Tuesday and that all non-old people are at school or at work.  Oh yeah, he replied.

And I made him eat a hamburger.  Well, I didn’t have to make him.  See?  He’s well enough to eat a hamburger with gusto.  He should have probably gone to school.

And we shared fried green beans with ranch dressing.  Mmmm..

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Gene and Bette gave us their very nice white couches when they bought new ones for their apartment.  Those things need to be slipcovered ASAP before we cover them with poop, sriracha, black dog/human hair, and chocolate.

Small photos today for some reason.  I’ll figure it out later.  Jeremy & Vince both felt ill last night and so today, I let them both sleep in and see if the rest would do them some good.  Edda seemed a little bit sniffly, but otherwise in good spirits, so I fed her breakfast and then off to school for her.

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Vince & Jeremy both decided to work from home, Jeremy working on catching up and Vince emailing all his teachers to figure out what is due when and if he could postpone some exams this week.

Both the boys are pretty good when the Motrin is at the height of its efficacy, but they both feel pretty lousy when it starts to wear off.

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Gong gong and Vince are back at it (it being daily Chinese lessons) – this time virtual study sessions.

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Date night: grocery store

Cookies.  I wanted one but I didn’t buy any.  Not even a small one.