Today is the one year anniversary of Job's heart transplant.
Seth wrote a letter to our donor family a few weeks ago and I got to hand it to our transplant team this week. It's up to them if they want to receive it or ever respond. We will be so happy to let them direct our interactions.
When we first started talking about heart failure and possible transplant I started wondering how to think about it. What to say about it.
How do you possibly ever articulate such immense gratitude?
We talked about having some sort of family celebration to acknowledge this day, because it feels like the most monumental day in our lives. The big boys were especially troubled by this idea, however, because how do you celebrate a day that is also such a monumental day of pain for another family?
Ultimately, we didn't really get to decide how to acknowledge this day because Job decided for us. He had his annual biopsy a few days ago and needed a great deal of oxygen during the procedure and then spiked fever after fever in the PACU and CICU. When febrile his heart rate and respiratory rate skyrocket, so we're still inpatient on quite a bit of oxygen and don't expect to go home for at least a few more days. Though he's not showing typical cold symptoms, he did swab positive for a virus so that seems to explain at least some of his recovery issues. It was a great relief to get a viral explanation because, of course, everyone's mind immediately flies to possible rejection. His biopsy results came back completely clean, however! No rejection.
Seth wrote a letter to our donor family a few weeks ago and I got to hand it to our transplant team this week. It's up to them if they want to receive it or ever respond. We will be so happy to let them direct our interactions.
When we first started talking about heart failure and possible transplant I started wondering how to think about it. What to say about it.
How do you possibly ever articulate such immense gratitude?
We talked about having some sort of family celebration to acknowledge this day, because it feels like the most monumental day in our lives. The big boys were especially troubled by this idea, however, because how do you celebrate a day that is also such a monumental day of pain for another family?
Ultimately, we didn't really get to decide how to acknowledge this day because Job decided for us. He had his annual biopsy a few days ago and needed a great deal of oxygen during the procedure and then spiked fever after fever in the PACU and CICU. When febrile his heart rate and respiratory rate skyrocket, so we're still inpatient on quite a bit of oxygen and don't expect to go home for at least a few more days. Though he's not showing typical cold symptoms, he did swab positive for a virus so that seems to explain at least some of his recovery issues. It was a great relief to get a viral explanation because, of course, everyone's mind immediately flies to possible rejection. His biopsy results came back completely clean, however! No rejection.
He is terribly irritated to be in the hospital and to have extra cares and to feel so sick. This is the first time he's been able to express himself verbally while hospitalized, and so he's letting us know that he "really, really, really hates it". He mostly ignores his providers and me but if he does acknowledge us then he does so with utter scorn and derision.
I've joked to some of the transplant team that they're so nice to him that he keeps wanting to come back for more attention and to celebrate his transplant in the very place it took place. All "joking" aside, SCH takes such wonderful care of us; we're so very grateful for this place and these people.
I think this admit and its drastic change of plans for our week underscores what transplant life means. What CHD means. We are immensely grateful for this beautiful gift of a new heart. But it didn't fix Job. He will always struggle to stay marginally healthy. He will always be in and out of the hospital. He will always need close monitoring. He will always mess up my plans. We're so incredibly thankful to have this extra time with Job but it's still really hard and it will always be really hard. I've struggled for months to write any sort of update because of this tension but I've been realizing that this will always be a tension we will wrestle with and I won't ever be able to articulate it well.
If I'm being completely honest I don't feel very celebratory. I'm so frustrated to be at the hospital again. And that feels like such a betrayal to our donor family's sacrifice. I struggle to feel all my feelings and still hold them accountable for what I know to be true. This is really hard AND I'm really grateful. This really hurts AND God will use it for my good and His glory.
