Job had very sad morning. He was NPO (no food by tube/mouth) so his tummy felt empty (even though he was on his D5 fluids - sugars and lipids) and he did not like it. He also got lots of blood draws and echos and exams so he was irritated because of those as well.
His lungs look much better and he's tolerating his respiratory support weans so he got an hour off BiPap and was on hi-flow instead. He switched away from the BiPap mask to a nasal mask because, as you can see, the mask was hard on his skin. He will get more and more breaks off of BiPap and on hi-flow if he keeps his sats up and his x-rays continue to show his lungs remain open.
He needed his LPA stent to get greater blood flow to his left lung but his recent echos show that his lung issues no longer seem to be plumbing issues. His team is hopeful that his heart function and pulmonary vascular flow will continue to improve with more time. There does not seem to be an arch issue as was originally speculated or anything else that needs a surgical fix. Job "just" needs more time.
He an echo earlier today to look at his atrial clot but official results aren't back yet. Unofficially, it doesn't look bigger. Part of the clot has adhered to the atrial wall but part of it looks "floppy". The concern is that this floppy part could dislodge and cause great problems. While a clot could be problematic for anyone, the body has an amazing clot filter in the lungs. For typically developed hearts, blood is pumped through the atrium to ventricle to the body and then returns through the lungs to begin the process again. For Job, with his single ventricle heart, there is no filtering process. So his lungs can't catch a traveling clot.
The risk today is not greater than it was last night. But having a slightly better understanding of the situation has certainly impressed upon me the gravity of the concern. This is scary.
His heparin regimen is not to break up the clot but to prevent it from growing and to organize it, to make it tighter, so that the body can resolve it. We want his clot to stabilize and then be reabsorbed by his body. We certainly do not want vein/artery occlusion or stroke or any such clot complications.
Job's body has shown us that its stress response is to clot rather than bleed out. This clot is very likely because of his RA lines, a clot forming and sticking to the intrusive plastic of the lines. We think it is a consequence of how much support he was/is on rather than a symptom, showing us he's getting sicker.
Job went to Interventional Radiology this afternoon for placement of his PICC line. Job is always a hard poke for lines and he goes through his PIVs quickly, so despite the increased risk of clot at the PICC line site, he needs the more stable access it will provide to give him his meds and for the greater ease of blood draws.
After nine long days of being unable to hold Job, we were finally able to Sunday night. He likes being held but we probably enjoy it even more than he does.
I don't really know how to talk about his condition right now. We're sad, very sad. Concerned too. I know it's a good thing to look for progress and be excited for the progress he has made, but right now it just hurts to hear really happy, positive, hopeful comments. I don't want to minimize progress, but Job's situation is very critical and we're very aware of that.
We know God has a plan for Job that will be for our good and His glory. But it's currently a very painful plan. We are now expecting weekS in the CICU.
Tomorrow will bring another echo and anti-coagulant levels and perhaps additional clarity. He's getting food again, he won't get poked now that he has a PICC line, and we expect he'll get several BiPap nasal mask breaks, so he should be a much happier guy tomorrow.
