Short version: Lucas is doing fantastic, and as of 2/25 we’re back HOME in Vancouver, WA!!! Our next Seattle visit will be on 4/1 for his 3month post-transplant catheter biopsy.

We’d celebrated Lucas’ 2nd birthday on 1/15 with a move from the ICU back to our familiar surgical floor. After our early post-transplant scare, it was simply amazing to see Lucas’ recovery take off and to move out of the ICU within a week of surgery. 

Our time on the floor was marked by continued recovery along with tons of medications, labs & monitoring. One day in particular, they did “serial labs” –  a process where they took blood 8 times throughout the day!  We counted ourselves extremely fortunate that Lucas continued to be so agreeable taking oral meds. He had SO many – and just took them all like a champ. It’d have been very stressful if he’d put up a fight or thrown them up. The med that affected him most was Prednisone, an immune suppressing steroid. Lucas was ravenous and prone to rage fits. It was encouraging, however, to see him eating so well – and to see him remain pink (instead of turn blue) when he screamed! The best part was seeing Lucas transition to walking around the room without any IV lines hooked up. It was the first time he’d been “cordless” since his diagnosis on 10/15/19. The day before we discharged, Lucas had a quick procedure to remove his CVC IV line. How incredible to have him cord and tube free.

After a week on the floor, Lucas was able to discharge from the hospital on Friday 1/22!! Corey & I had an intensive week of caregiver training and education, and took a big bag of prescriptions with us. The feeling discharging reminded me of when Corey & I left Portland Adventist with our first newborn baby, Addy. Disoriented leaving the medical setting, relived to be out of there, terrified of the responsibility, and amazed that they just let you walk out with fragile life after such close observation & care. Add a serious dash of excitement, hope, freedom, possibility and profound graitude.

Seeing Lucas reunited with Addy was magical. After 2.5 months separated, they were little peas in a pod again. Seeing them get to take a bath together for the first time was overwhelming. Lucas had always required special IV dressing cover, and basically a washcloth bath – always anxiety provoking. He wanted so badly to spash in the water with his “Sisssy”, and we could finally let him!

Lucas’ post-transplant recovery has a few different elements:

–   The first is simply his body’s recovery from the trauma of enduring such a major surgery. From this perspective, Lucas has done wonderfully and is more or less “healed”. His scar looks way better than we’d expected, and the redness he has now will fade. We needed to keep his incision dry, and use “sternal precautions” the first 6 weeks to ensure his chest healed well (butt scoop to pick him up – no under arms).

–   The second recovery element is how the new heart is adapting and functioning to a new body and circulatory system. With Lucas, the concern was always the high lung pressures created by his native heart’s dysfunction. This was very scary the day after surgery, but Lucas has done very well since. He’s able to be on medication (sildenafil – look it up) to directly relive his pulmonary hypertension. Previously, that medication would have overloaded his restricted heart. A healthy heart should be like a 4 lane full flow freeway. Lucas’ was congested to 2 slow lanes, and traffic was U-turning from the wrong side (his VSD holes in the divider) to clog his freeway to 1 lane. With his new heart, it’s wide open & full throttle. It’ll take time for the lungs to remodel and for the pressures to come down. Lucas’ team is confident this will continue to improve over time.

–   Lastly, Lucas’ immune system sees the new heart as alien or “non-self”. It’s critical to lower his body’s natural defenses to prevent organ rejection. Immune suppression is the ‘cloak of invisibility’ for the new heart. This will be necessary lifelong. Immediately after transplant, Lucas was put on an IV drug called “Rabbit ATG” (look it up!) that provided heavy immune suppression for months. This bought time for the team to dial in his ongoing med levels and white cell counts. He was also on Prednisone, which thankfully was tapered off completely over 6 weeks. Lucas has 6-7 meds a few times a day at this point, two of which are for immune suppression – Tacrolimus & MMF. It’s a very tricky process for the team to dial these in. If not dosed correctly, they can cause damage to other organs (kidneys especially). It requires frequent labs and adjustments to ensure levels are appropriate, and Lucas’ kidney function is good.

We spent a month in our Seattle apartment together adjusting to the beginnings of our “new normal” as a family. The adjustment went fairly well. What absolutely astounded us to see is the sheer amount of energy Lucas had. It quickly became clear that Lucas new heart truly breathed new life into our boy. What an incredible gift. The snow was a highlight! There and gone over a couple days. It was so great “tubing” down our driveway with the kids!!

Lucas had frequent clinic visits & lab draws early on, which have tapered over time. Each clinic visit starts with an echocardiogram to look at function and screen for rejection, EKG & vitals, pharmacy consult, transplant coordinator RN consult, then attending physician.

4 weeks after discharge, they released us to go home. We’d been unsure of when they’d feel good enough to let us go, so we hadn’t packed. Once we got word, I picked up a U-Haul trailer and we were gone in 24hours. Coasted into our driveway at home on fumes.

We had a 2 week clinic visit to Seattle on 3/9. Left at 5am, back home at 1pm. Lucas continues to do remarkably well.

Next up is a catheterization & biopsy procedure at the 3 month post-transplant mark, scheduled for 4/1. Please say a prayer for the team to find no evidence of organ rejection. The standard practice is to do a biopsy at 3mo, 12mo, then annually – ad hoc if they believe rejection is occurring.

Thank you as always for all of your love, prayers and support!! We appreciate you all so much!