It's nothing particularly concerning: of course he's sore! They sliced through a muscle he uses constantly! But it is sad. Sometimes I forget how sad because despite his pain, Job still smiles. And smiles brightly.
We are still really, really excited that Job is home already, but the exhaustion is setting in. All of the real life stuff that we paused for a few days is tumbling back in.
Last night after switching out Job's cannula for a new one, giving him all his meds, plus doing the regular baby stuff like a diaper change and food, I just collapsed into bed (and left Seth to put the big boys to bed by himself). Job is so much work, all of the time.
One thing that is extra exciting is that Job is off of his anticoagulant, Lovenox!!! He was on it last summer and then got switched to aspirin but after his multiple clots in September (including his atrial clot!!), we went to a very high dose of Lovenox. Giving him an injection twice a day has probably been our least favorite aspect of his care, so to be done with it is so wonderful. Perhaps even more (emotionally) painful than giving the shots was seeing his thighs and arms covered in dime shaped bruises. I will be so glad when they all fade! Job is now on a half-tablet of baby aspirin (which he'll be on for the rest of his life, though the dose will increase with his size).
The surgeons and anesthesiologist were determined not to place a central line for his surgery on Tuesday (as every clot as been line provoked) and they were successful! That did mean some extra work and extra pokes in the ICU to monitor Job in recovery without those lines, so I'm very grateful everyone was on board and willing to put up with a mere PIV.
Hematology is proceeding with a full work up, however, to determine why Job is hypercoaguable. I'm very curious! We have seemingly ruled out most genetic causes but will wait for the final results in coming weeks.
We're still keeping him pretty secluded for fear of germs and because he's pretty touched out. As we were writing about last week, he's going through a big developmental stage change and doesn't want people too close to him. I think today will be a come late and leave early kind of day at church. He is warming up to his brothers again and now that we're being more aware of what he needs, he is much happier.
We took the boys out on a fun excursion to the Naval Museum and to the Bug/Reptile Museum in Bremerton to pet snakes (!!?!!) yesterday. They can't stay cooped up as much as Job needs them to be. They had a blast! And they really have done so well adjusting their desires for what's best for Job. I wish it didn't need to be such an either/or choice, but such is life.
Job is also eating sooo much! I need to hurry up and make another big batch of sweet potatoes+carrots puree for him as that's his favorite meal 3-4x a day! As disappointing it is that we need to do so, thickening his bottles has really helped as well. He must be going through a growing spurt with how much he's eating but we have yet to see a big weight gain.
Sometimes it helps me to write out these big long posts so that I can see that not everything is dreary. We have much to be thankful for. It's hard to acknowledge that sometimes, as it's easier to focus on all the hard things, to wallow in our exhaustion and pain and fear. It definitely is a discipline to give thanks amidst hardship and It's one I need to exercise more often. It's just honest. Things are hard but God is good. That's not a trite Pollyanna-ism. It's true. And it's hopeful. Sustaining.
"There is strength within the sorrow.
There is beauty in our tears.
You meet us in our mourning,
With a love that casts out fear.
You are working in our waiting.
You are sanctifying us.
When beyong our understanding,
You're teaching us to trust."
https://youtu.be/B66DHRY1ITs
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