Lisa n Tom (n James n Joseph)

  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