Year: 2017

I wonder how long I’ll enjoy taking care of Edda?  When the kids were infants and I was home with them all day – nursing, cleaning, diapering, laundering – I went bonkers.  Literally medication-worthy bonkers.  Now I could lie in bed all day with Edda feeding her oatmeal, monitoring her poops, giving her pain meds and resting – happy and lazy.  I think there is a huge difference this time around.  First, I have a job to go back to once this convalescence is done –  when the kids were babies I was really unemployed which meant that I was a full-time stay-at-home-mom and this was something I never thought I’d be which made me itchy.  Second, I have so, so much help now.  For example, today, my parents watched Edda in the morning and fed her breakfast which allowed me to get Vince off to school and go out for a run.  Then in the afternoon, Adriana came and helped me maneuver Edda into the shower where we washed her hair for the first time in 10 days and took off her big bandage.  This was a big production, Edda’s still in pain during the transitions from standing to sitting especially.  I don’t like moving her myself without someone else’s help.  While we were showering, mom and dad downstairs were making dinner.  Maybe I should have gotten more help when the kids were infants.

We are about 4-5 doses of running out of Oxycodone.  Do you think I can just call and ask for a refill?  Or do you think that they gave me enough to last how long the pain usually lasts?  The fact that it’s a controlled/addictive substance gives me pause.  Will the person on the other end of the phone refuse the refill?  I’m not sure why this makes me nervous to ask.  Anyways, Edda’s getting stronger everyday, maybe we won’t need anything past the 4-5 doses.  But I’m a person who likes to fill a take when it gets to 3/4 empty even though you can go another 150 miles, so it makes me nervous we’ve gone through more than half the med without backup.

Adriana is a rock star and she’s been encouraging Edda to walk to get her bowels moving.  And when we couldn’t get any results from her distended belly from our constitutional around the kitchen, Adriana and I gave Edda an enema and we were rewarded with a lot of ??  – the whole process involved KY Jelly, rubber gloves, 4 diapers, a full change of bed sheets and then a much more comfortable and sleepy Edda.  Even though Jeremy is in California, we have a house full of helpers to cook, help Edda up and down the stairs, give enemas, lift wheelchairs, study Chinese and give carpool rides.

Vincent wuz here

Edda laughed for a moment today!

Mom and Dad are here helping out.  Edda loves my mom’s cooking.

Vince, me and Bihan spent a good deal of time this morning cleaning out Vince’s room.

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On the other coast, Jeremy and Donald went biking.

California has such beautiful biking places, Jeremy laments.  Did he rent some fancy road bike?  Maybe.

Now he’s with Ben and MaryAnn!

Jeremy left for the Bay Area & Portland – lucky Jeremy, he gets to see Donald!  My parents are arriving this evening to ease us through the week.  Jeremy had to pack for all occasions from a long bike ride (with Donald) to a suit and tie, so it was very complicated.  He had to break all the rules business travelers follow and check a bag!   Kitachi was kind enough to work a couple of extra hours so I could drop Jeremy right off at DCA.

I did have a moment there in the day where I snuck away to a used bookstore in the area.  Whenever I really need a bit of alone time, I like to find a good bookstore to spend a couple of hours.  Good bookstores are hard to find these days, I made do with this one.  Not that I’ve read any books this year – I really think I’m at zero books.  I have to go look at my book journal.

After I came home from dropping Jeremy at the airport, we all gathered in Edda’s room to snuggle. And to try and get her to smile.  She’s not really smiling yet – we got the one smile when she realized she was at home, but no more since then.  Vince is trying to encourage one.

We managed to score not one, but two (!) grey fuzzy blankets from friends.  Two different friends, same awesome blanket.  We spent a couple of hours under their fuzziness.

I made a relatively lame dinner of chicken sandwiches and tater tots and these two played violin duets together.

We celebrated 10 years in Maryland tonight!  It’s been a good decade, Maryland is a good spot for us.  Bihan found her way to Georgetown today and brought back cupcakes:

At the same time, Jeremy ordered a Ben & Jerry’s ice cream cake (Maryland themed).

I thought maybe we could sing the Maryland song which I was pretty sure Maryland has but I didn’t know what it was.  It turns out that it’s racist.  So we didn’t sing it. They need to get around to changing that.

Edda had a good peaceful day with lots of sleeping and resting.  She managed to make it up and down the stairs three times today, arriving at the table for breakfast, lunch and dinner.  The frequency of the pain medication dosing is elongating and she seems more comfortable with eating, pooping and being moved.  I’m sleeping a lot with her and resting myself.  There is nothing more I want than to snuggle up next to her while she is slowly rebuilding her strength.  I’m determined in the next month to be a little lazy, take adequate sick time off to care for Edda, to not rush back to work & my to-do lists.  As Vickey says, it’ll all get done.  I need some time to recuperate myself.  It’s the beginning of summer & I want a summer break.

Where did this boy come from?  When he came home from school yesterday, he looked after Edda (who was sleeping soundly after a dose of Oxycodone) and shooed me to the grocery store with a list that he needed to make dinner.  He wanted to make shrimp parmesan.   He breaded and fried each shrimp, made the tomato sauce from scratch and had it ready on the table at 6pm because I told him Jeremy had to leave for a meeting at 7pm.

I’m so used to both Jeremy & Vince knowing how to cook, I forget other 15 year old boys don’t really know their way around a spatula.  Vince does all the substitutions – if we don’t have a certain ingredient, he knows what else in the pantry he can use instead.  Jeremy might have taught him how to cook, but now Vince has his own cooking personality – he’s making dishes that Jeremy would never make.

Bihan (in the photo below) arrived in the middle of the cooking extravaganza and she’s at the house for a couple of weeks between music festivals.  We spent some time on the dog walk talking about tendonitis of her wrists and fingers from practicing violin for hours everyday.

*****

Here’s our first smile when Edda came home on Wed.

After I mentioned that Edda’s pain seemed well controlled, then it seemed like it wasn’t.  We are trying to get her to walk a little bit, go downstairs for meals, and sit up in a chair, but it’s the transitions that are the most painful for her.  Yesterday morning, I had left for a run while Edda was still resting comfortably in bed and Jeremy was trying to move her downstairs to eat breakfast when it became really clear she was in a lot of pain.  He was trying to manage her pain and her body position and get her dressed but her PJs and sheets were soaked with pee.  He had to yell to Vince and wake him up.  That took a while because he’s a sleeping teenager.  When I got home, Edda was sitting in her wheelchair on the first floor and eating breakfast, but Jeremy had to leave pretty early for a morning appt. leaving me and Edda alone to get her back into bed.  Which I did on my own with great angst and trepidation and Edda not too traumatized.

I spent the day sleeping next to Edda, doing nothing.  I don’t really like to do nothing, it is against my nature, but Edda and I did have a very nice, restful day together her alternating between valium and oxy and me alternating between dozing and napping.

We are home!  Edda pooped, ate breakfast, and took meds by mouth which were the requirements set by the hospitalist for discharge and we did them all by 11 am.  Jeremy came and picked us up in the van – our trusty accessible van did its duty and brought Edda home without too much repositioning on her part.  We all had dinner together and Edda ate tacos with an enthusiasm lacking during the many attempts at feeding her hospital food.  Kitachi helped me with giving Edda a bed bath, lots of log rolling and careful maneuvering.  Now she’s asleep – without the oxy which was due at 9pm if needed, but it seems to be not needed right now as I take sleeping to mean that she’s in relative comfort.

*****

It’s nice to see Vince again, he essentially spent 6 days on his own.  We saw him for no meals, no going to schools or coming back from schools.  We saw him at a few bedtimes and wake up calls.  He was semi-responsible for Maxi and cooking for himself which resulted in Maxi needing to poop a ton each time Jeremy and I would show up at the house because Vince would cook himself a bunch of elaborate things (gumbo with roux!) and then would leave various food items close to the counter’s edge and then Maxi would eat the whole thing and Vince would short change Maxi on the walk and only let her pee and not poop.  (Maxi is a nervous pooper, you gotta go at least a block before she finds the perfect spot).

I’m sure Edda’s home right on schedule because of all the support (both near and far) from all our loved ones.  Thank you all!  <3 <3

I got to go on an evening walk with Maxi and Jeremy.  Almost back to normal.

Is there anything more satisfying than an opioid-induced sleep?  Probably not which is why it’s such a problem.  I refused pain medication for about 24 hours after my C-section with Vince because I was worried that it would go into my breastmilk to Vincie (and somewhat worried about becoming dependent on them), but after 24 hours, my exhaustion set in (I had gone through a 40 hour on-an-off labor and then the C-section) and I took that first pill and was able to sleep well for the first time in three days.  I try to ask for the right amount of pain medication for Edda, but, honestly, it’s a little tricky. They constantly change the pain med orders on me, swinging from every 6 hours to prn (pro re nata (as needed)) without really telling me or Jeremy and it’s hard to keep track of the administration of the med to Edda.  Last night, at 10:30pm, she was completely restless and her heart rate was up at 145 and I found out she hadn’t had any pain meds (except Tylenol which I consider a dangerous med (liver) with no upside (has anyone’s kid’s fever ever gone down on acetaminophen?) for twelve hours.  Argh.

*****

Jeremy and I have had completely orthogonal hospital experiences.  We’ve split the time 50/50.  His 50% is usually alone where he finishes email and works on PowerPointTM presentations. Edda  comfortably walks, transfers to the chair and tries to smile.  The various services come in and do their thing and leave.  Information seems concise and clear.  No one calls him – Hi Dad!  How’s she doing today?  On the other hand, I have 10,000 people calling me “mom”.  Hi Mom!  Did she have a bowel movement today?  Hi Mom!  Does valium work well for her?  OK Mom!  Support her butt as she stands.  Edda and I have tons of visitors, texts and phone calls, each taking care of me and Edda.  I get student occupational therapists with mentors trying to train me and Adriana how to do bed transfers and there was drama with that.  Pain med dosing, feeding regiments get all moved around on me.  And I get to help with the enemas.  I’m not sure if it’s a gender thing? Or a personality thing?

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The doc just came in.  Took out her drain & changed the dressing.  If we can eat something today, we are outta here!  Here’s her incision all super glued together.

Jeremy & I switched out places last night.  I drove down to DC and we had dinner with Edda (kind of).  Maybe I should say we sat with Edda while we ate our pork Baja Burrito.  She was having none of dinner.  Then Jeremy headed home and I stayed the night.  Edda slept well last night, and today she alternated between being strong (she walked all the way down the hall and back) and weak (she winced a few times transitioning between sitting, standing and laying down).  She’s been in bed all afternoon and I know I should get her sitting up in a chair for dinner, but it hurts her and I don’t want to do it.

Being in the hospital is a little like being on a long flight.  The same background noise of controlled air flow, the neutral tones of the room and the soft corners of the equipment.  Various people in uniform come in and ask if you’d like anything to eat and the food is all bland in the same airline way.  And there is a feeling of trapped-ness.  There is nowhere to go and nothing really good to do.  Just waiting and napping and reading mindless materials or watching movies that don’t hold my attention.  I think Jeremy is better than I am at being productive in this kind of space.  Edda’s wound drain is still in her back, we are waiting for that to come out.  We are waiting for her appetite to come back so the feeding tube can come out.  We got the first poop today via enema, we are hoping for regular poops.  Those are our discharge goals.  On the one hand, I’m happy we are here to have lots of help with moving and feeding and cleaning Edda, but on the other hand, I long to be back together in the house.  <3

OK, now we are done with Post-op day 2.  No ? yet, for those keeping track. (It’s a requirement for leaving the hospital).  I lost it for a moment there yesterday, but after a good night’s sleep in my own bed, I feel much, much better.  During the surgery, we saw Chenny in his lab upstairs where he works on childhood cancer research.  We got to look through a microscope to see some cancer cell lines.  Lauren stopped by right after Edda was settled into the ICU to drop off warm scones (delicious!) and give me a pep talk.

The next day, Christine & Jane stopped by and we got into a long discussion about how ICU nursing is not a bad gig. Edda was still very much groggy.

Soojung came by and brought me lunch and by then, we had gotten the orders to move to a regular floor.  Soojung helped me lug all my things from the ICU to the regular floor while the nurse & tech moved Edda.

Then we had a little bumpy moment where Edda seemed in a bunch of pain or stress, her heartrate was in the 130s and her blood pressure seemed a little high.  She also seemed warm to the touch. Soojung, more mother bear than me, helped me get Edda more pain meds ordered and maybe some extra fluids.  Then Nat came by with Dara and Nat told me that I should rest and I took her up on her offer and slept while she tended to Edda.  Then Nat and Dara left and Jeremy & Vince came and we all switched places.

I had a very peaceful night sleeping in my own bed while Jeremy stayed with Edda in her room & spent all day with her.  These are his photos.

By the time she woke up this morning, all her numbers were back to normal.  She had a few bites of orange and oatmeal – a good sign.

The ortho resident came by to check Edda’s incision.

Jeremy and the PT/OT team got her walking a bit into the hall and then got her settled into a seat for a couple of hours.

By lunchtime, Edda was exhausted and slept for a couple of hours.

I came by at 6 pm, just in time to see Edda walking to the chair for dinner.

Still no smiles.  A decidedly pissed off Edda gave me the stink eye.

 

Now I’m settling into the night here.  Fingers crossed for a quiet night.

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On my run today, I spied some neighborhood kids with a sign proclaiming – “ART SALE”.  I have a rule to always buy things from road-side-kid stands, so I commissioned original art for Edda.

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Vince and I spent some time watching youtube together.

This is what we watched.