Lisa n Tom (n James n Joseph)

It's Day Eleven and Joseph is about to get sprung! Everything always takes longer than you think it will, so while Tom and Joseph are at the hospital awaiting the official sign off, Lisa and James are getting lunch and then taking the world's fastest tour of Philadelphia's historical sights. Lunch: Ben Franklin's print shop: The Liberty Bell (through a window outside -- closed for COVID): Betsy Ross's house: Chinatown: Not exactly historic, but LOOK, there's a James restaurant! And here come Tom and Joseph! And about three hours later, we are home! (Thank you, cute neighbor Charlotte, who "flocked" our yard.)

 They asked us on the first day whether they should put Joseph in a regular hospital bed or a crib. After all, he is four. He sleeps in a toddler bed at home. But what they don't know is that Joseph is part spider monkey. For his safety and all of our sanity, we went with the six-sided, full-enclosure, basically-baby-jail crib. He didn't mind. Rolling down to the cafeteria, the guy at the front desk asked if we'd like these balloons somebody left. Why, yes. Yes, we sure would. The Waddler. Meanwhile, we moved into our third apartment. For Joseph's previous surgery, we stayed at the Ronald McDonald House in Camden, NJ. It was AWESOME, but COVID rules prevented us from bringing siblings. Since James is not really an optional family member, we made alternate arrangements. We were in an Airbnb at the Croydon Apartments up until two days ago. It was nice and tidy and quiet and had a full kitchen. The parking situation was typically Philly-difficult, but that's normal. We...

 Joseph charming the radiologists. Smiling for the camera. Meanwhile, back at the Airbnb, James and I discover Tapper (from Wreck-It Ralph) is a real video game!

Junior Great Horned Owl. The atrium is echo-y. Meeting up with a former coworker, Moses, whose daughter is coincidentally receiving treatment at CHOP at the same time. Always nice to see friends.

  Hi   Fan   Club , Well, we thought we might be heading home today, but a problem he's been having on-and-off since surgery that they thought should have resolved by now still hasn't resolved. It's junctional rhythm with an absent P wave. Requisite link to nearly incomprehensible article here:  https://www.healio.com/ cardiology/learn-the-heart/ ecg-review/ecg-topic-reviews- and-criteria/junctional- rhythms-review Anyway, his heart isn't beating quite right. It doesn't seem to bother him at all, but it bothers the doctors enough that they'd like to keep watching him for another couple of days. So, we'll ask for an extension at the Airbnb and order Joseph some more pancakes and give James more time to work on his new skills and keep ya'll posted. Love, Lisa Flipped the mask. The apron he's wearing has a pocket on the back to hold a little portable monitor. Smiling for the x-ray camera. Repurposing the recycling. Biggest bubble yet.

  Dear Joseph  Fan   Club , Things that happened yesterday: * They removed one of Joseph's three drainage tubes, one electrical line, and one of his three IVs. Joseph barely made a peep during all this. * He ate two bites of a chocolate chip pancake for breakfast. * They removed his Foley catheter and I promised him M&Ms and possibly the moon if he would pee in his diaper. * They got him sitting up on his own and, later, performed some delicate choreography to remove him from the bed and let me hold him on my lap (loooots of tubes and wires to watch out for). * He ate four bites of a chicken nugget for lunch. * Screentime. All the screentime. * He ate two bites of a sandwich for dinner. * He got his M&Ms. * James reports that he watched TV, played video games, and beat his dad at air hockey. Today begins Day Three. Estimated time of departure is Day Seven. So far, we're on track. Love, Lisa Attachments: - 2020 is weird. The view from Joseph's window. People standi...

  Dear Joseph  Fan   Club , Joseph is out of surgery. Everything went well. Here's a "before" video once the "silly juice" kicked in. https://youtu.be/Bes8ZSavm4A     And attached is an "after" picture. I counted three drainage tubes, four electrical leads, a catheter, and nine medicine pumps, plus the O2 sensor and a drip bag of saline & glucose. Most of these will start coming out tomorrow; all of them should (hopefully) be out within 72 hours. Man, it was a long day. It was about seven hours from when I said goodbye to him outside the OR and when I could go see him again in the recovery room. Extra thanks to my sister for Lori for calling and telling me ridiculous stories about her family pets for an hour mid-surgery. It was just the right topic at just the right time.  (Extra bonus story: For Joseph's prior surgery three years ago, Lori flew out from Washington State to help take care of James so Tom and I could spend more time with Joseph ...

  Dear Joseph Anderson  Fan   Club  members, West Philadelphia, Joseph and James. On the playground is where they spent most of their day. Well, we'd be on the playground, but it's almost 100 degrees out and both kids are glued to iPads.  But we did drive up to Philadelphia stupid-early this morning to check in for Joseph' pre-operative check-up, again. He's been fretting about the COVID swab and "mosquito bite" (blood draw) ever since the last visit. And, sure enough, when he and Tom emerged from the hospital, Joseph loudly and indignantly announced, "They did my nose AND a mosquito bite!" No amount of lollipops is worth this, in his opinion. Medical staff, you are on notice: Joseph is not going to put up with much more of your pokey shenanigans. We report to Cardiac Surgery tomorrow (Wednesday) at 6 a.m.  Love, Lisa

  Dear Joseph  Fan   Club , When Joseph was in the NICU after he was born, we'd get a morning update from his medical team. They'd give us the plan for the next few hours, days, and week. I love a good plan. I'd cling to that plan, tell my mom and Tom's mom about the plan. And then I would get very frustrated when the plan  inevitably  changed. It felt like everybody was being flakey and inconsistent. It took several weeks for me to finally figure out that it wasn't flakeyness, It was that the medical team was responding to what Joseph's little body was doing. As pressures and levels changed, so did the plan. So, with that in mind, HERE'S THE PLAN. On Monday, July 28th, the whole family (me, Tom, James, Joseph) will leave early in the morning to drive up to Philadelphia Children's Hospital for Joseph's pre-surgical appointment. Poor kid has to get a COVID test  again  (3rd time) and probably a blood draw and x-rays  again  (2nd time) because ...

  Hi Joseph  Fan   Club , Joseph's heart surgery has been rescheduled to July 29th. Again, Joseph and I will go up there the day before for pre-surgical testing (including his third COVID-19 nose swab*) and then arrive bright and early for surgery the next day. In case anybody is new to the  Fan   Club  or doesn't remember the exciting adventures from a few years ago, here's a recap: * Prior to being born and adopted by us, Joseph was diagnosed with  transposition of the great arteries . In a nutshell, the two main arteries that  are supposed to go from the heart to the lungs and body are flip-flopped. How does this happen? Nobody knows. It doesn't seem to be hereditary. It doesn't seem to be related to any sort of prenatal trauma, illness, substance abuse, etc. It just happens. * After being born, Joseph was in the NICU at Children's Hospital of Phoenix for six weeks while they did a couple of procedures to get his blood oxygen saturation le...

Hi Joseph  Fan   Club , After a long day at the hospital for pre-surgical stuff yesterday, they made the decision at about 8 p.m. to postpone today's scheduled surgery due to a double ear infection. Joseph and I hopped back into the car and headed home last night, arriving at 11:30 p.m. New plan: Meds for the ear infection for the next ten days. Visit with primary care physician to evaluate ear infection on Friday. If it looks clear, reschedule surgery for end of next week. So I guess yesterday was a trial run. We'll keep you posted. Love, Lisa

Hello members of the Joseph  Fan   Club , It's been a while. Two and a half years, in fact, since I was sending out these messages to keep you all updated on the status of Joseph Anderson's first heart surgery. You will recall that Joseph was born with transposition of the great arteries and had a Glenn procedure back in September of 2017. The successful operation bumped up his oxygen saturation 10 percentage points and made him a much pinker (less blue-ish) and energetic boy. Here he is four days after surgery:  eating and dancing . And here is last week:  dinosaur underwear  and  Spider-man .  Annoyingly, the time has come for his second -- and hopefully last -- heart surgery. This one is called a Fontan procedure. It's scheduled for  July 14th  at Children's Hospital of Philadelphia. Due to COVID-19 protocols, only one parent can accompany the patient, so Tom will take him up the week before surgery to do all of the pre-surgical testi...

Lisa writes: I'm back-blogging. Somehow, we have a a lot of extra time on our hands (no commute) and yet no time to get everything done. Fishing this year hasn't been nearly as productive has last year. Last year, we could drop a line off the bridge over the creek and pull up fish after fish after fish. Literally, we were inviting ways to make it more difficult for them to catch the hook, such as dangling the hook and bait a teeeeensy bit above the surface of the water to make them jump for it, just to make it more sporting, This year, we're lucky to get one or two bites in an hour. Part of it may be because there are a lot more people around and IN the water. We saw a group of young teenage boys jumping off the bridge into the creek -- not a good idea due to the big rocks in the water not far below the surface. I'm pretty sure this isn't allowed, but I'm not the creek police. Anyway, who would blame fish for swimming as far away as they can from this sort of no...

Sunday morning. James gave me a tattoo. Social distancing with the neighbors. James learned to whistle, sort of. And how to pronounce "th." Encouraging signs around the neighborhood. Rolling down the hill behind the school. Dragged out the baby pool. Joseph made a "wainbow." Wrap-up.

Lisa writes: Sunday morning. Photography by Joseph. Monday. Joseph is cooler than any of us could ever hope to be. A little bit of chocolate ice cream after dinner. And then a big chomp on James' shoulder in the bathtub. (Why?!?) Documenting a pandemic: Social distance floor stickers at Chipotle. They have these all over stores and take-out restaurants. No in-store dining, only take-out or delivery allowed. Only "essential" stores are open, which includes Walmart, Target, Home Depot, drug stores, grocery stores, and (weirdly) gardening centers. Videography by Tom. Videography by James. Videography by Joseph Thursday. All the way down the hill with no hands. Saturday. Bedtime. Bedtime is exhausting to the big people who are trying to get the little people to go to bed.

Lisa writes: Sunday morning. The boys made a jumping pile. What could go wrong? Back to the park parking lot. James does more bike tricks. Zoom church with the fam. Monday. Joseph is, apparently, a hat. Facetiming with Grandma. The bike tricks continue. All of the gyms are closed, so Tom has assembled his own personal Crossfit setup in the basement. Tuesday. The Getty Challenge is a thing right now. People recreate a piece of artwork from the online Getty Museum collections. Here's "Boy with Dragon" by Pietro Bernini and Gian Lorenzo Bernini, Rome, Italy, about 1617. And here's "JoJo with Dragon by me and Tom, with dragon on loan from James, about 2020. Wednesday. Here's JoJo with a very small dragon (or maybe a dinosaur). Saturday. Joseph would like a few words with you. The Blue Angels flew over. It was billed as a tribute to front line workers during the pandemic. They did...