Tuesday, April 30, 2013

Feeling better!

 On Sunday, Harry perked up considerably.

He stopped needing morphine between doses of Ibuprofen, and he regained his appetite and his sense of humor.

Our parents all came to visit, and Harry scored some serious presents-- magic tricks galore and a couple of really cool Lego sets, plus balloons.  Ben and I took turns hanging at home and the hospital.  Dorothy was not allowed to sleep on the PICU, so she and I did days, and Ben stayed overnight.

I pretty much sat on the couch in Harry's room and fed the baby.  It was all nipples all the time unless she happened to be cool with the nursing cover, which I started using after Harry's teacher and librarian showed up because you never know who's going to pop into your room.
 Harry got rowdy Sunday night and started blatantly cheating at go fish
 Dorothy got some exercise, and I wish I could have joined her because I spent 12 hours sitting on a couch Friday, Saturday, Sunday, and Monday, unless I was pacing the halls which wasn't very often because hospitals are gross and I have a 6 week old. (see below).  The cardiologist apparently thought I was a total freaking moron because she told Harry's pediatrician that I was worried about my other kids catching whatever Harry had.  Um, no. I was, however, super nervous about toting Dorothy around the freaking PICU and kept asking everyone if she was OK to be there because I didn't/don't want my baby to get the plague.
 On Monday around 10:30, Harry called room service to order tea and a croissant.  He kills me.
 More! Nursing!
 We even switched sides.
 Our old college friends sent Harry an awesome care package.
 After one of the residents pulled Harry's chest drain (gross-- Harry was totally skeeved out by the way he could both hear and feel the tube coming out-- he tried to describe a whistling inside his body), we were unceremoniously booted out of the PICU and kicked up to the general peds floor where everyone kept trying to get us to check out the playroom, but all I saw was VIRUS! BACTERIA! RABIES!
 So we played Battleship instead.
 Harry is really going to miss room service.
 We colored, played some Go Fish, read the 4th Harry Potter book, had a nice visit from some friends.
 Marveled at how squishy our baby is.
After Ben came with Whole Foods deli dinner (oh my goodness-- we have been hitting WF 4 or 5 times a day because it is right by the hospital) and we all hung out for a bit, Dorothy and I went home.  I have had a normal routine day with the 3 little kids, while Ben and Harry languish in hospital limbo.  Harry should be home soon with a follow-up cardiology appointment for the precisely least convenient time of the week, when I will have no choice but to bring everyone there by myself.  So, look forward to hearing all about that.

Sunday, April 28, 2013

Intensive Care

What Ben and I have always liked best about the kids' pediatrician is that his party line is, "I am not concerned."  For the past almost 7 years, this has been exactly the right thing to say to us because we are usually concerned about everything.  We called the doc-on-call the night baby Harry lost his umbilical cord, for example, because his belly button was a little bloody.

On Friday morning, though, when I took a snotty, feverish, foul-tempered Cooper and a white, weak-voiced Harry who was complaining of increasing chest pain and could not catch his breath when we walked up the stairs to the doctor, the pediatrician was very clearly concerned.  I could tell because he spent over two minutes listening to Harry's heart and then asked the other pediatrician in the office to come in and listen, too.  He also sent Cooper to the lab for a complete blood count instead of confidently telling me it was the dread Justavirus (which it totally turned out to be-- I got the diagnosis over the phone while I was in the ER, but I am getting ahead of myself.)  The telltale sign of concern came in the waiting room at 10:26 am where we were waiting (duh) for Cooper's blood test and the doctor came to find us to tell us he spoke to a pediatric cardiologist at the children's hospital and we should go to the ER.  Right away.  (As soon as, you know, we tortured Cooper with a CBC, the cherry on top of a swell office visit.)  No, it wouldn't be a good idea to go pick Jack up at school first, and no, we really shouldn't wait for Ben to come home from class even if it meant dragging a 6-week old and an infected toddler to the hospital.  We should go there.  Right away.  (But first I asked for some Tylenol for poor wretched Cooper whose ibuprofen had worn off).

So we did, me frantically calling the school secretary so Jack could stay in the office until Ben made it home, Harry sobbing because all he wanted to do was go home and take a hot bath, Cooper screaming because of the blood draw, the fever, and the waterfall of mucus exiting his eyes, nose, and mouth.

As soon as we got there, Harry had his second echo cardiogram of the week, this one showing an enormous increase in fluid around his heart.  I didn't know that the echo was bad, though, until a couple of (brilliant, awesome, took such good care of Harry) cardiology fellows came down to see hm and casually mentioned in the course of conversation that we were being admitted to the PICU so they could drain the fluid in a couple of hours.  Who the what now? (Tip from someone who studies communication:  WORK ON YOUR BEDSIDE MANNER A TEENY BIT).

They were right, of course, and by 4:26 that afternoon, Harry was sedated, Jack and Cooper were home with my brother, and Ben, Dorothy and I were walking the halls of the pediatric intensive care unit while a terrifyingly large team of crash cart wielding cardiologists and critical care doctors STUCK A CATHETER IN HARRY'S PERICARDIUM, or as Ben and I understood it, put a pen in his heart, because one of the docs took a ballpoint pen apart and showed us the tube when we asked a logistical question about the procedure, so that's what we said to make each other laugh.  We imagined it was a lot like that scene from Pulp Fiction only with Patch Adams instead of the John Travolta character. (And obviously, the goal of the procedure was not to stick anything in his heart-- that was one of the risks though--one of a list of risks that were so stomach turning and petrifying I had to walk away and let Ben hear the rest of them).

The doctors drained 8 ounces of fluid from Harry's pericardium. 8 ounces.  That's a lot.

 He has fluid around his lungs as well.  He's in the PICU with manageable pain and a drain in his chest.  We don't know what caused the effusion.  He is in fairly good spirits, and so are we.

Saddest thing he said:

I told him the good news about checking into the hospital was that he didn't have to be in pain anymore because the nurses could help him.  He asked how, and I said they had lots of medicine.  He asked what kind, and I said any kind he could imagine.  He asked if they had cherry.

Since then. he has learned about ketamine, midazolam, and morphine.

We're hanging in there, even if there is a place we never thought we'd be.
so helpful in the ER, this one

resting heart rate in the mid-140s at this point in the ER


moby wrap worth its weight in gold

homework in the PICU


Monday, April 22, 2013

That was so scary

Since Dorothy has been born, Cooper has had 3 separate viruses (and went to bed tonight with a fever!) and an ear infection.  Harry has had strep TWICE and currently has a nasty virus.  Jack ate Cooper's leftover pudding out of his pudding cup tonight and will surely spike a fever any second.

But that's not all.

Today, Harry complained of the same chest pain he has been complaining about since he started his new antibiotic, which he hates and swallows really strangely.  We assumed that he was simply swallowing too much air and had gas, but for the last couple of days, he said his chest hurt when he laid down. He stayed home sick from school today, and by noon, I was a little freaked out because his voice sounded weak, and he was white as a sheet except for the giant purple circles under his eyes, and his breathing was shallow. I called Ben, who was on his way home from work so Dorothy and I could hit campus, and suggested he make an after-nap appointment with our back up doctor (doctor out of town) for after nap, mostly because I wanted him to feel the joy of taking multiple kids to the germy doctors office, but also because I was concerned about Harry.  I mean, mostly that second one.

Ben texted me this picture during my meeting:
That's Harry getting an EKG.  He also had a chest X-Ray. Apparently, pediatricians don't fuck around with shallow breathing and chest pains.

His X-Ray was fine.  His pulse ox was OK.  One of his EKGs was normal, but the second one was not, and he couldn't take a deep breath.  The pediatrician sent him straight to the ER at the children's hospital, where a pediatric cardiologist was waiting to give him an echocardiogram.  Um.  Shit.

Dorothy and I left my meeting, obvs, and met Ben near the hospital to exchange car seats and switch cars, so I could take the 3 little kids home.

Ben texted me this picture, and I got worried.
Because it is never a good sign when the actual doctor does the procedure.  Where are the techs?

Thank God his echocardiogram was fine, and he got to come home. His antibiotic seems to give him terrible gas/reflux, and his pericardial sac is a little inflamed-- maybe from his latest round of strep.  He is supposed to take lots of ibuprofen and follow up with the pediatric cardiologist later in the week if he doesn't feel better.

He was happy to leave for home.

Tomorrow, H is home sick again.  Cooper is also sick.  Jack is staying home because I have to take everyone (all 4) to see another pediatrician to check Cooper's ears and the appointment is during pick-up.  And Ben has in-service ALL DAY LONG.  Magical and special for sure.

Birthday wrap up. Also, blergh.

Jack has no school today and is a whiny wreck.

Cooper's stomach is all messed up from his antibiotics.

Harry is home sick from school.

And today is the day my leave ends, and Dorothy and I have to go to work when Ben gets home at 1.

So, I will let the pictures of the Pump It Up party extravaganza speak for themselves.  (It was great-- Jack's whole class plus some kids from the other 4K class plus his cousins and grandparents were there, and they had so! much! fun!)

A great birthday-- lots of cake and presents and family time.

And now, back to the hell that is my day.  Kidding.  Sort of. Let's just say I am not sad that Dorothy and I have a meeting...

Thursday, April 18, 2013


We have a routine!  I was worried we never would again.

On days Ben doesn't go to campus, Dorothy and I sleep until 7, and I don't have any official big kid responsibilities.  We spend the day at Little Gym and running various errands before H and J get home.  Cooper naps.  We put away laundry.  It's lovely.  And I am on my way to screwing it up when I go back to class for 3 weeks and drag Ben and Dorothy with me.

On days Ben works, he leaves by 6:30, so I am up by 6:15, so I can brush my teeth and have a cup of decaf before the boys get up. The very first thing I do is start a load of laundry. I make breakfast and serve it while juggling the baby and eating a granola bar and a Greek yogurt.  Dorothy, eats too.  Dorothy sits in her bouncer or her rock n play while I clean up, and all 3 boys watch PBS kids.  To minimize fighting, Harry and Jack get dressed one at a time.  Then Jack watches Dinosaur Train or plays in Cooper's room.  Harry plays his DS (if he got all of his stickers the previous day at school) in my room next to the bouncer.  He is great at keeping Dorothy either asleep or happy.  Cooper comes in the bathroom and freaking trashes the place while I shower, pull on some stretchy clothes, see how many days I can wear a top knot and beach wave spray in lieu of a shampoo, and cut my 5-minute face down to 3.5 minutes.  Dorothy gets a bath, which everyone helps with, and we dress her in silly clothes and take her picture.  I switch the laundry and supervise/ clean up after tooth brushing. We go outside to play/ take a walk before school.

After drop-off, I take advantage of Dorothy's Ergo nap to prep lunch for Jack, Cooper, and me, start the third and usually final load of daily laundry.  I also wipe down all 3 bathrooms, vacuum and dust the bedrooms, and dust the main floor.  Cooper grabs a Swiffer duster and the vacuum attachments and gives me a hand.  He also makes a huge mess with a snack and craps himself.  If I am on my game, I get all of the laundry folded and put away and feed the baby again at least once before it's time to get Jack.

We have lunch while watching Sesame Street, and Cooper goes down for his nap.  After I clean up lunch, I have 2 hours to lounge on the basement couch, read a book, work on my online class, and doze while Jack plays and Dorothy naps and eats.  Ben is home before H gets out of school 2 days a week (and, um, not, 1 day-- that's a rough one, but he is almost always home for bedtime), and the kids play outside or we take them for a walk/bike ride until it's time to make dinner.

Most nights we cook-- like, really cook with side dishes and everything!-- and Dorothy dozes in the Ergo while I clean up.  Ben does bedtime now for all 3 boys.  I rush to finish my housework-- kitchen cleaning, shaking out rugs/sweeping out laundry room, packing lunches-- and while Dorothy is either in the Ergo or content in her chair/rock n play, I wash my face and put on my PJ's and turn down my bed-- basically, everything I need 2 hands to do.

By 7, I am on the couch with everything I might need for the night, including a baby who eats and sleeps continuously.  All 3big  kids are out by 7:15-7:30, and Ben and I have a 2-hour couch date.  By 9:30, Dorothy and I are in bed.  She wakes to eat at 2 and 4:30 and is up for the day by 7, when we start it all again.

Saturdays, we do nothing-- except the daily laundry of course and dinner and kid work-- you know.  Sundays, Ben, Cooper, and Jack grocery shop, and Dorothy, Harry, and I clean.

So far, 4 kids are as easy as 3, which is not to say they're easy, but another kids can be juggled in, you know?

Outfits that have made me laugh lately: