A Sad Day (9/19/16)

I don't even know where to begin this update or how much to say.

Job is not doing very well. There's probably no other way to say it. But there is still so very much support that can be offered to him to help his body as he struggles. He's not in immediate danger.

We need to give him more time, absolutely. But we're getting to the point where we need to start exploring what is going on with his little body because he is not responding as he should be.

Most Glenn patients extubate in the OR or shortly thereafter and extubate to minimal respiratory support. Job is three days post-op and is ventilated and on a great deal of respiratory support. Why?

We're hopeful that he just needs more time to recover from surgery and his heart function will continue to improve and that he will get off the vent soon and his sats will improve. It's possible that time is all he needs. But the longer he takes the more concerned everyone gets and soon we need to explore what else it could be.

Job's Sunday morning echo might have shown problems with his aortic arch repair. He's getting another echo tomorrow morning and the results of the echo will probably tell us a lot about what the rest of this week will look like. A cardiac cath is a very likely possibility in the next few days to further explore Job's heart function if he doesn't improve in the next 24ish hours.

Job did extubate today but after about an hour needed reintubation. We think that his extubation failure was mostly a sedation problem rather than a heart problem or a lung problem. Job is in so much pain from his headaches and so uncomfortable from the breathing tube that he needs a lot of sedation. But he needs to be "awake" in order to extubate and breathe on his own. But he's so delirious from the balancing of his pain meds and sedation that he can't wake up. It's a hard balance to find. So he's off propful again and on dilaudid and we'll try again possibly tomorrow.

Job's left lung collapsed during extubation, likely because of the pressure change from invasive-ventilation (what he's had - the nasal breathing tube) to non-invastive ventilation (no breathing tube but very high support, higher even than hi-flow).

During his brief extubation!

While extubated Job had some secretions and he wasn't awake enough to cough them out, even when they suctioned, because his sedation was so deep (but again, it needs to be deep because he is so incredibly irritated and therefore agitated when he wakes up). If he had been able to cough, he probably could have kept his lung from collapsing and therefore from reintubation.

While reintubating, he got "bagged" and this popped open the top of his left lung. Overnight we'll diurese the bottom of his lung open in addition to his ventilator setting tailored to give him extra pressure support to pop it open.

The boys got to come visit today, which was really, really nice. They did not want to go to co-op this morning but did such an amazing job of being cheerful and obedient and joyfully attentive once there. I thought I couldn't be more proud of them or more grateful, but then they got to the hospital and had to spend three hours sitting in the back of Job's room basically alone, drawing and watching a TV show while I tried to help Job calm down during and after his extubation trial. That wasn't the plan for the day at all! We were going to play together and talk to Job! But they instead sacrificed their desires and served their baby brother and I.

When Job calmed down (well, was heavily sedated and muscle relaxed, following intubation) and Daddy came, they got to talk to him and it just amazes me how comfortable they are looking at his poor disfigured, swollen, scarred body. They love him so very much and are so thrilled to see him, every time. I don't know how, but they just don't even notice his incision or tubes and wires. In fact, they even call him "the cutest baby". It's hard enough for me to look at Job right now and it's such a blessing to me to watch them interact with him here post-op so fearlessly and with such adoration. I have been so concerned about how they would do through this trial over the last seven months but they have been so resilient - it is such an answer to prayer. They help me so much physically and emotionally.

All five of us!

Please keep praying for us. People remark on our strength often but we have nothing in and of ourselves. Your prayers are, through God's strength, sustaining us. We feel very weak right now. This is scary and sad. It's going to be hard waiting for answers these next few days.