Thank you all for the continued thoughts, prayers, love & support for Lucas and our family!! It means more than we can say.

Lucas remains on the heart transplant donor waitlist, and we were recently moved back into the hospital (11/9/20). He’s been increased to highest priority pediatric status 1A, and is stable as we continue to wait for the right heart. Part of the trade-off with his status increase is that he’ll stay inpatient until he gets his donor – sooner we hope. Hospital COVID restrictions are currently pretty rough – only Corey or I can be w/ Lucas. No alternate caregivers. We swap out front of the hospital, the other w/ Addy.

My last blog post was in March. Doesn’t that feel like a decade ago? What an unique and strange time – filled with unexpected challenges, stressors, anxieties, hard decisions, opportunities, new hobbies/ventures, and hopefully some quality “bubble” bonding time for each of you.

We felt like we had a head start to everything being flipped upside down. The rest of the world caught up to our sense of disorientation and restriction. I guess in that way it was probably less disruptive for us. Ironically, the initial COVID chaos just bolstered our (already significant) gratitude that we were out of the hospital and TOGETHER! Thank God we got out of the hospital pre-COVID. We really felt for the folks that were stuck during that time in particular.

2020 TIMELINE:

• 1/15/20 – Lucas’ 1^st Birthday!
• 2/14/20 – Corey & Addy move out of Ronald McDonald House into a triplex apartment near hospital
• 2/28/20 – Lucas & Andrew move into the triplex apartment!
• 3/15/20 – COVID lockdown implemented in Seattle. Toilet paper unavailable.
• 4/15/20 – Lucas has procedure under anesthesia to place a new long term IV line called a “tunneled CVC” in his chest.
• It’s an improvement – more stable than the PICC line in the arm.
• He can wear normal clothes without special snap sleeves!
• It still requires a ton of vigilance to make sure the line doesn’t pull…
• 5/1/20 – Corey’s parents Kathy & Roger move back home to Washougal, WA.
• We’re forever grateful for the sacrifices they made to move up to Seattle!
• 5/15/20 – Lucas gets fever, ER admits him:
• Main concern was potential IV line infection, so they start presumptive treatment w/ heavy duty antibiotics.
• A few miserable inpatient days later, Lucas developed a rash that faded quickly, and his fever broke.
• Turned out he had a common baby virus, Roseola. We were discharged after 5 days.
• During this inpatient stay, our 14yo dog Jasmine went to doggy heaven back at home. She had a good long life, pampered til’ the very end.
• 6/1/20 – We recieved permission to take our first family trip home to Vancouver, WA
• 6/15/20 – Request granted to go home full time, with clinic visits in Seattle every few weeks!
• We kept the apartment for visits – also knowing we may need to move back at any moment.
• 8/18/20 – Corey & I celebrate our 8^th wedding anniversary
• 8/20/20 – My maternal Grandma, Dorothy Dowty, passes away peacefully, with my Mom & sister Laura at her side. She was 87 and lived a very good life, was so loved and is missed greatly.
• We were able to celebrate her life together with family the following week
• 9/15/20 – Addy started preschool at the Camas-Washougal COOP.
• 10/15/20 – 1 year since Lucas’ initial Cath, where we learned he had RCM
• 10/17/20 – 1 year since we were transferred and admitted to Seattle Childrens
• 10/29/20 – We got a major call from our cardiology team:
• Lucas’ BNP heart stress lab results had trended up, and his Echocardiograms showed some concerning changes that could indicate progression of his heart disease
• They wanted to do another catheterization (Cath) – the only accurate way to read pressures and resistance inside Lucas’ heart & lungs
• Based on the evidence they had in hand, they wanted to plan to increase Lucas’ Milrinone IV medication dosage, admit him, and make an exception case to get him listed 1A (highest priority).
• 11/6/20 – Lucas passes one year on the heart donor waitlist (status 1B)
• 11/9/20 – Lucas was admitted inpatient at Seattle Children’s
• 11/10/20 – Cath Procedure:
• There’s a lot more detail here, but let’s say it was definitely re-traumatizing sending Lucas into another Cath with concerns and unknowns.
• Procedure aside, Anesthesia isn’t trivial for Lucas. It’s considered high risk for many cardiac kids, I think in particular with his heart disease.
• The results were a mixed bag. His pressures weren’t up, they were the same – which was slightly surprising to the team. That said, they weren’t down either after a year on a high dose vasodilator (Milrinone).
• I’ll explain in another post, but a high pressure climate ultimately takes it’s toll on the lungs first, which can preclude the possibility of a transplant. Lucas isn’t there, but this is always a concern.
• 11/11/20 – The morning after Cath, I wake up with Lucas in ICU. He’s gotten tangled in cords, lines & tubes, tried to stand up, and ripped his tunneled CVC clean out.
• Yes, this is the same line we managed to keep save, clean, dry & intact for 7mo outpatient! Here we are Day 2 in the hospital, and BOOM.
• It was bloody, shocking, traumatic (for me). He wasn’t in pain. Main concern was infection & getting some regular IV lines placed to get his medicine running again.
• I’m not squamish, but I turned grey and got nauseous – the nurse had me sit down!
• 11/12/20 – Lucas is increased from waitlist status 1B to 1A by exception request
• UNOS, the governing body, has a few weeks to review.
• If they reject, it goes to a review panel.
• This is a primary reason we remain inpatient. Can’t leave and remain 1A.
• It’s been long enough that all are confident Lucas will not have the exception request rejected, and he’ll remain 1A
• 11/13/20 – Lucas has new tunneled CVC procedure, under anesthesia (2^nd time in a week).
• New hospital rule is “NPO” (no food/drink) at midnight regardless of procedure time
• Lucas wasn’t wheeled back until 2:30pm.
• Let’s just say this was a rough day
• 11/15/20 – We get our old room back.
• Feels like a bizarre time warp.
• Being 1A does feel like progress, however, and we know he’s jumped into a smaller pool.
• 11/30/20 – After the initial chaotic week, we’re starting to settle into a routine again
• Due to COVID, only 2 caregivers identified at the beginning of the stay (Corey & I).
• As of today, only 1 can be in the hospital at a time. This is tough when we have family up to help w/ Addy. At least Corey & I could be together in the hospital room. Now we’re fully ships in the night tagging in & out, the other w/ Addy.

That’s plenty and enough for now. I’ll elaborate on a few items shortly. Feel free to ask questions in the comments, or by asking me on social media, text, or email (afade947@gmail.com).

We love and appreciate you all!