Monday, May 29, 2017

Post op day 3.

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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.

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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

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Sunday, May 28, 2017

Post op day 2.

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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.

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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.

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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.

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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.

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

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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.

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

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

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

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

******

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.

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This is what we watched.



Saturday, May 27, 2017

Surgery Friday.

We are on the other side!  Pain controlled, trying to sit up in a chair and getting back to all the things Edda loves to do like eating regular food.  Thank you for all the 💗 and support, Edda appreciates it all.

We went to Children's at 5:30 am on Friday morning and got whisked into pre-op.  Edda got some compression devices for her calves to prevent blood clots and a warm, inflatable hospital gown.  It's attached to a blower which inflates little pockets in the gown with warm air.  I've not seen that before.  If it were quieter, I wouldn't mind one for myself at night.  Unlike her parents, Edda was calm and smiling and laughing once she woke up properly.  We talked briefly with the surgeon, met the OR nurse & the anesthesiology team.  We (Jeremy & I) were drowsy, but the medical team was wide awake and enthusiastic and exuded a confidence and excitement that was reassuring.  She was wheeled away from us at 7:30 am and we understood that it would take about an hour to settle her in and the incision would probably happen at about 8:30 am.  We were told that the surgery would last 6-8 hours.

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Jeremy worked.  I just waited.  The waiting is the worst part.  Then around 11:30 we got an update from the OR that everything went smoothly and they were finishing up and she'd be ready to come out soon.  It was early!  We met the surgeon in the waiting room who said everything went well - "without a hitch".  I shook his hand & thanked him and said, so I'll see you at the follow up appointment?  He kind of laughed and said - no, I have one more case today and then I'll see you this afternoon.  I thought surgeons just cut and run!  I don't know what's going on...sigh.  He did see us in the afternoon to check in on us and then said he'd come by this weekend sometime.  The incision looks clean and dry.  She has a little tube in her nose all the way to her stomach for some formula because it'll take her some time to start eating again.

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Edda got a unit of blood last night because her hematocrit was a little low.  But it was a very quiet night for both her and me.  I slept in a fold out chair next to her.  We are in a shared room, so I had eyeshades and earplugs and every once in awhile I'd wake up and check in with her nurse.  I have a whole slew of nursing observations, this time from the patient side, I'll write about it later.   Edda got intrathecal morphine which everyone was excited about - sometimes you can't do that in a spinal fusion - because that should ease her through the toughest pain post-op (they tell me).

Today she was cleared for regular foods, though I tried to feed her all her favorite breakfast foods: eggs, pancakes, fruit, yogurt and she didn't want any of it.  And we had OT / PT help us get her up into a chair.   She sat up for a couple of hours already today.  And we'll be moved to a private, non-ICU room as soon as the transfer orders are in the computer!


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Thursday, May 25, 2017

Ready, youtube.

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Hello loves.  Tomorrow is the big day.  We are ready.  We've supplemented with iron the whole month & we managed to have a huge poop at 8:20pm.  Edda's gut is clear in anticipation of the constipation-inducing pain medication.  Edda is in good spirits.  I was, this morning, feeling incredibly nauseous and awful, a physical manifestation of my emotional state.  You know how, before you have kids, you promise yourself that you'll do anything for your kids as long as they are OK?  That you'll walk across the flames of hell or climb the icy slopes of Everest or be the WH press secretary to an insane person (ok, maybe not that.)? I know it's not really rational, but this past month I've felt like I screwed up that promise in the very first moments of Edda's life.  That when she was just a little zygote in my warm belly, I started her out with such a great disadvantage, how could I ever make it up to her?  Anyways, I think she's going to be really pissed at me tomorrow at about 4pm when she wakes up, but I'm hoping she will be much more comfortable in the long run.  It's a big surgery, but it's a routine surgery.  Every Friday, our surgeon opens up the back of a child and bolts a bunch of rods down his/her spinal column.  To him, it's marks the beginning of the weekend, I suppose.  I'm lifted up out of my moody mood by my family and friends.  Edda's charmed many people in her life and they are all calling and texting to figure out when to visit and when to help.  I'm grateful.

*****

Vince has been (after electronic curfew) crawling into our bed to show us famous you-tubers.  We had the corgi/weightlifting guy a few weeks ago, but he only updates once a week.

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Now we are watching some other dudes.

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Wednesday, May 24, 2017

Volt, platelets, body pillows.

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To really celebrate my graduation (btw, thank you all for the congrats in the graduation post), I went out with 3/5 of the usual suspects to Volt in Frederick.  I wish 5/5 of the usual suspects could have made it.  <3.  We talked a little bit about Edda's spinal fusion and what I should bring & what I should expect.  Soojung told me the hospital (Hopkins) gave her a PCA pump (patient controlled analgesia pump) to control pain medication dosing for Alice so she'd wait for Alice to show signs of pain and then she'd push the button for her. But Soojung always thought the pain med administration was too late - that the outer signs of pain meant that Alice's pain was very high and that she wished she could tell when the pain would just begin to increase so she could administer the med early.  Lauren mentioned to be prepared that the PICU for the first night might not be a private room, but the room on the regular floors were spacious and always private and that I should bring extension cords and a small bedside lamp and a fitted sheet.  Lauren also said because Edda'll be face down during the surgery and they are pumping fluids into her, her face'll be pretty swollen and misshapen when she comes out of surgery.  Does this make the dinner celebration sound sad & solemn?  It wasn't all about the surgery, we also talked a lot about other non-hospital related stuff and it was great to celebrate with the U.S.

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The medical bills are rolling in.  From the four specialties we saw: hematology, cardiology, pulmonology and neurology our cardiology appt was the most expensive.  Granted, we did have an EKG & echo done at the appt, but still - it was only 40 min long.  We are very lucky to have the medical coverage that we do - Edda actually has two sets of insurance, the one through my work, BC&BS for Federal Employees and a Medicaid waiver.

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*******

I somehow took a random photo of my foot on the track on Tuesday.  I love the track and I can also hate the track.  I thought this week, I'd be swimming in extra time because I no longer have school, but it's not quite true.  Vince is on an off-schedule this week with mandatory testing for other grades.  He didn't have to go in until noon M-W, and I'm trying to pick up extra carpool shifts because I'm abandoning it completely for a few weeks, so I'm dropping off at noon and picking up a couple hours later which seems like no time has passed in between.  I'm trying to finish stuff at home and at work so I can leave it alone for 7-10 days and not think about it.  Today, I got a few phone calls from the hospital, one to tell me that Edda should be at the hospital at 5:30 am on Friday and not to eat after midnight.  Then 2nd was a complicated phone call from a hospitalist who was concerned about her low platelet numbers.  Should we do another blood draw tomorrow (Thurs) and recheck the numbers?  Or should we do it the morning of in pre-op?  I knew that rechecking the numbers was a possibility and transfusing her with platelets in Rockville was also a possibility, but I really just wanted them to take care of it the morning of in pre-op.  I was actually at lunch with a friend who works with lab values and nurses all the time (Georgetown) while I was on the phone with the hospitalist and she (my friend) said getting platelets a day before is useless, it's only necessary the day if you even need it at all.  Argh!  In the end, they are just going to check it the morning of the surgery.  You know, I really, really hate it when they call and they ask me - so what did the hematologist say to you about her platelets?  As if I remember her numbers exactly and want my recollection of a medical situation I don't really quite understand to guide the treatment of my daughter?  And didn't I just pay your hematology colleague $1000 to give you, the hospitalist, his opinion on her platelets?  Then, in the afternoon, I felt queasy and ill and exhausted.  I was snappy at Vince (poor kid, he was the only one around) and then proceeded to take some sick time off to take a Motrin and a long nap.

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Jeremy came home in the evening and we had pork sandwiches on pretzel bread rolls.  On the dog walk, we bumped into friends whose daughter had the spinal fusion surgery a few months ago at Children's.  They gave us some tips and also offered us some body pillows and wedges.  Their daughter is typical (meaning no special needs), and it's nice to hear from them their experience because Edda won't be able to tell us anything.  They said repositioning was key.  Use the pillows and change positions every few hours.  Sometimes their daughter wanted repositioning every few minutes until they found something comfortable.  I also was reassured today by her bus driver who had a hip replacement recently that the pain meds act very quickly, well at least the IV ones in the hospital.

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*****

Edda and me in bed tonight, all smiles and happiness.  <3 <3 <3.

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Monday, May 22, 2017

The best Lemon Meringue Pie

Hi! This is Vincent writing this blog post because I was growing impatient of the speed at which the epic tale of my lemon meringue pie was being told to all of you. as someone who is more into cooking than baking something like this really isn't my forte. But after a long time thinking about it (about 20 seconds) I came to the epiphany that lemon meringue pie is good and I wanted to eat some. So a few hours over 3 days I set out on the quest to make a delicious lemon meringue cheese cake pie.


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first i had to make the dough. it consisted of mostly butter and flower and tasted just like it sounds, really good.

DAY 2


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Then I had to make a cheese cake filling, and i learned a fancy new Italian word, mascarpone.










(pretend theres a photo of me making the lemon curd)













Day 3


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the best part, we finally get to see the fruits of my labor. What would be a lemon meringue pie with out a nice meringue

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My parents, being the responsible adults they are didn't want me unleashing my inner pyromaniac. thus we used a heat gun instead of a blow torch to crisp the meringue.

Haircut, camera, skin.

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On Saturday, I gave Edda a haircut so she'll look good at the hospital.  I know that sounds a little strange, but her hair was starting to creep into her eyes and I didn't want an extra thing bothering her while she was resting and recuperating.  You can kind of see her curve as she sits in her chair, her neck always askew and tilted towards the left.

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I also spent some time trying out the new camera.  I wish I knew from first use if I will love a camera, but it's hard to know until you've worked with it a while.  Will I reach for it all the time? Or will it sit collecting dust?  It's kind of the same thing as buying jeans, you never know which ones are going to be your favorite until you wear them for a while.  I think I should like this camera because I have great affection for every other camera I get and this is the every other one.

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This camera is responsive, small, good in low light.  There is a different way of taking pictures with responsive cameras that I've forgotten after years of using the iPhone.  The kind of photos you can take are so different if I can only remember how to compose them, gotta bring that muscle memory back.  Edda's skin looked better, but not perfect, on Saturday.  But today, it looks good.

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