Job has so rapidly progressed that my head is still spinning. I can't articulate how unexpected and how (medically) inexplicable and just all around amazing his strides forward have been.
On Thursday morning (9/29) Job was still on 8lpm of oxygen support on hi-flow. Yesterday and today he has had several long breaks off all oxygen!
I wasn't at the hospital quite as much this weekend/week because Seth and Ezra were out of town and Isaac could only be asked to stay at the hospital for so long each day (and he can't sleep here). I think that contributes to my feeling of shock and awe because these changes seem even more sudden.
I went home Saturday night (10/1) feeling cautiously hopeful for the first time in two weeks. Job had made several weans on his respiratory support and narcotic doses and his clot looked stable. But he had been so very critical for so long and his team has been so worried, that I was afraid his weans wouldn't stick but the fact that he had weaned at all and seemed to be turning a corner was exciting. He has shown us so many times, however, that we need to carefully temper our expectations.
So when I came back to the hospital Sunday (10/2), I was conpletely astounded that Job was down significantly on his respiratory support. His ND tube was also pulled back from his duodenum to his stomach, as a NG tube.
We had been aggressive with the narcotic wean, so after a fitful night I asked that he get a break from weaning further on Monday (10/3) - even though he didn't score too high on the withdrawal standard. Since he was already at 2lpm and only 35% FiO2, we also decided to get an x-ray to check his lungs, since he seemed so prone to atelectasis. The attending who came on service that morning kept talking about transferring down to the floor but I didn't really believe her. Until I left for the day to take Isaac to co-op and teach piano and got a call mid-afternoon that he was heading to the step-down ward!
On Tuesday (10/4), Job switched from hi-flow to "wall oxygen" with a regular nasal cannula at lpm but 100% oxygen and stayed steady on that throughout the day and half of Wednesday. He kept oversatting in the 90s, so around noon we decided to just turn it off entirely. He did really really well! But my skepticism it wouldn't last through the night was well founded and he had to go back on around 10pm. He struggled to maintain his sats on 1.5lpm this morning but now he's off it again. We're not entirely sure why. We'll see how the rest of the day goes. We have plenty of time to wean down still.
The very best news is that today's echo seems to show that his atrial clot is gone. G-O-N-E. There's some residual thickness on the atrial wall and it's possible that the clot could have dislodged, but it sounds like his body would have already shown us where the clot went. His neurological, renal and cardiac function seems unchanged and so we're hopeful that, in fact, the clot has been reabsorbed and isn't lingering in the body somewhere, ready to cause problems elsewhere. I've asked three different doctors to look at the images and I still need to hear it from Job's primary cardiologist, but this is such thrilling news.
I was going to ask that Job get to bottle feed yesterday, but my favorite OT/PT was off so we're going to wait until today to work on that. Job doesn't recover from surgery well. He doesn't NOT clot well. But he has always fed well and I'm excited for him to give bottle feeds a try after a break of almost three weeks.
I know many people are excited about Job's progress and are expecting discharge soon. It's still going to be a while, though. Actually, yesterday one of the first year residents came in to talk to me and when I told him Job had been off of oxygen for a few hours he said "well, that means discharge tomorrow!" I laughed (and then immediately felt remorseful for the tone of mockery in my laughter) and asked for him to go confirm that with the attending. Sure enough, no. Job will not be discharging today.
He could go home on oxygen. He could go home on the NG tube. He will go home on anti-coagulants and cardiac meds. So by all of these measures (respiratory, digestive, cardiac) he could be discharged. However, he has to stay in the hospital for his opiate wean. He has seven step down doses to get through before he can discharge and at best we could only do one a day. Realistically we probably need to go every other day. He started off on such a high high dose of dilaudid and it's going to take a while to get it down. Watching my three month old baby go through narcotic withdrawals was pretty difficult the first time around and I'm not looking forward to watching my almost six month old baby go through it again.
So. Job is doing much much better. He still has about 1.5-2 weeks left in the hospital, but compared to how much longer we thought he would have, based on how critical he was? 2 weeks sounds like a quick stay. It's only now that Job is doing better that I'm gaining perspective on how much life support he was on and how very dire his situation was. We certainly knew his doctors were concerned, very concerned, but we didn't have the context to know what that really meant at the time.
We are so very grateful for Job's life, especially as we know how close we were to losing it. That he is now progressing at all, let alone so quickly, is a testament of the Lord's kindness to us.
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