Job was born with such a serious heart defect that it was an easy explanation for his various physical ailments. Then his quick decline last summer meant we ignored other potential issues, if we even noticed them.
We had various conversations about his lung health, for example, but how much investigating did we need to do? We KNEW he had a heart defect that was causing his ever worsening issues. His poor oxygenation and very very slow weans off respiratory therapy seemed perfectly consistent with his CHD. We sent all of our home oxygen supplies back to our home care company back in November because a new heart had us all hopeful we wouldn't need it again.
Then he got a new heart. He was severely decommissioned from his decline all summer AND from surgery recovery AND was on high levels of immunosuppressants, so we expected when/if he got a cold that it would severely affect him.
So when his sats plummeted at the end of March we were really disappointed but not terribly surprised that we needed to admit for 10 days of oxygen. I really struggled during that hospitalization not to wallow in bitterness because, frankly, I'm sick of hospitals. I want to be home. I've been waiting and waiting for Job to be healthy enough so I would get to be home with all three of my kids since what, February 2016 when we got the initial diagnosis? We've never reached that level of stability and keep waiting for the next thing we need to do that will finally give Job that clean bill of health.
We were initially told that his first open heart surgery (the Norwood) was risky but that if Job survived it and then made it through the next six months (the "interstage" period) to his second open heart surgery (the Glenn), then life would get easier. He'd be considered medically fragile, of course, but would start to thrive. At 3 or 4 years old he would need another surgery (the Fontan) but then after that things would really get easier.
Of course, none of that happened. I don't want to dismiss the fact that so many babies born with HLHS die in the first six months. We recognize that, through God's mercy, Job is still alive! But he's not following the expected pattern. Kids with HLHS who survive the first six months are supposed to start thriving. They aren't supposed to go into heart failure when they start walking, as Job did last spring. My plans, adjusted though they were to include two open heart surgeries and an eventual third, started to crumble yet again.
I searched and searched to find any other toddlers with HLHS needing a transplant. It seemingly doesn't happen. For some reason Job has complication after complication, needing various surgeries and interventions and new consulting teams and new therapies. He doesn't die. He has survived. But he hasn't thrived. At least not like I expect him to. My entire life has been a struggle of laying aside *my* expectations and plans, but certainly I get to practice this in an especially intense way with Job. Or I think I practice it. I'm not so sure that I ever actually hold my plans in a completely open hand. I loosen my grip on said plan a little bit and then congratulate myself that, 'look! I'm being so trusting!'
I'm weary. I clung to the hope of transplant to "fix" all of Job's issues. I really did, even as I got frustrated with people who also saw his transplant as a "fix". 'Job will always have significant health issues,' I would mutter in my head, 'even with a new heart. And he will almost certainly need another transplant some day. He's not fixed.' In actual fact, though, I got really really excited about things getting easier.
So when we had to admit in March, I was furious. I wasn't worried about Job. His heart was fine. He just needed oxygen. I was just annoyed. We finally discharged but he never really fully recovered throughout the month of April. Various assessment appointments I had been looking forward to were cancelled and as the weeks wore on. And he started really struggling again.
We kept him home and just kept a close eye on him until we decided enough was enough and brought him back up to SCH for another admission. I'd been convicted all month that my attitude about our last hospitalization was wrong, so for the first week we were here at the hospital I was even pretty cheerful. I did a better job of preaching to myself about being grateful for each day of Job's life and for such an attentive medical team and people bringing us meals and caring for the big boys and checking in on us and praying for us. I told myself all the things I know to be true about relinquishing control over my timelines and expectations and trusting God's sovereignty and refinement through trial.
I threw myself into advocating for a Pulmonology consult to try to get some answers about Job's lungs and vocal cords and how we can optimize his respiratory health to then diminish our respiratory support.
And I got a lot of what I wanted. We made so many changes this week and started so many new meds and therapies that seem to already be really helpful. We have 10 some new, additional appointments on the calendar for this summer. We should be able to get to the bottom of all of these Pulmonology issues.
But now that I don't have to advocate for something I'm feeling bereft. We don't expect to discharge until next Monday, the 13th. It's hard to love on the big boys and Seth from up here. Job started steroids and is raging. He's missing his preschool classes and new speech therapy. We were on such a strong finish to the school year but that has now collapsed. It's sunny outside and I want to take the boys to parks and museums. Basically, all of my plans have again crumbled around me.
I'm trying to find joy and contentment and just be still in this. It helps that I'm still very convicted by my April pity party. But I feel weak to be able to persist even though the next four days we plan to be here at the hospital. And what happens if he gets another cold? We have another admit?
So, there's my bare confession. It's been a rough post-transplant seasons, emotionally for all five of us. It's been easier to keep it all tucked inside. But that gives the false impression that this is easy. It's not. I can't do it on my own strength. But I'm also struggling to "cast my cares on the Lord" and actually trust that He will see us through. Even though I know that He has already been faithful day after day to do so in Job's life. In my life before Job. In all of human history before me.
