NG TUBE:
Job is now tube free! It perhaps got caught on something because on 12/8 Job came running to me, crying and holding the tube half in his nose. Ezra held him down while I tried to get it back in, but it's really a 2-3 adult job, so I just pulled it all the way out and called to get permission to try all his meds by mouth.
He's doing well still, though it takes us alllll day to get his meds in, because there are so many and so many that taste terrible, but he's doing a great job with them! And as long as that continues, he doesn't have to have the tube.
FEEDING:
Job can eat solid foods by mouth! We have to be careful about hidden liquids and we have to thicken all of his drinks (to about a milkshake consistency). He loves to eat but now that the novelty of being able to eat again has worn off, he's being a picky two year old. What he loves one day he suddenly doesn't love the next day, but he is gaining weight.
IJ INFILTRATION/NECK WOUND:
Perhaps a week after his transplant, so mid October, Job's right side IJ infiltrated (leaked meds) and had to be replaced with a left side IJ. Because these central lines are so very important to give ("life support") meds, our first concern was to get a new line in. But many of these meds are toxic to the skin cells and the concern was that his cells would die at the infiltrate site and calcify and eventually necessitate surgery. The team acted so quickly to inject other meds to counteract the infiltration and it worked! He hasn't had any issues so far, though they will continue to assess.
CLOTS:
Because they need multiple access points while patients are on life support, after they placed the IJ on the left side of his neck they also placed an additional central line in his left arm. And when they pulled it out right before discharge, they found 8-9 clots in his left arm. So we've been giving twice daily injections of an anticoagulation drug (lovenox) to treat these clots. Job really really hates these shots and it's hard for pin him down firmly enough to administer it without injecting myself or somewhere else on his body.
Because taking a blood pressure or drawing blood could dislodge one of these clots, we can't do either of those things in his left arm. Which means his poor right arm veins are scarring up and becoming more difficult to draw from. We've basically alternated arms his whole life because he's had so many clots or because of that fistula he used to have in his right arm, so this isn't a new frustration, but because he already has small and squiggly cardiac veins, it doesn't make for fun blood draws.
The weird clot they found in his left leg (that must have traveled down to his leg, since he didn't have any lines in his left leg this time) has resolved, but the clots in his left arm have not fully resolved. The ultrasound he had earlier this week found that they're smaller but still potentially dangerous. So we have to now do another 6 weeks of anticoagulation therapy.
DONOR FAMILY CONTACT:
We are working on a letter to the donor family and will send it to the organization that facilitates contact in the next month or two. But they won't give it to the donor family until a year after transplant.
If the family would like to make contact with us, they can then do so, and we can exchange a round of letters without specific information, and then eventually can share such information and even meet someday if we'd like. The donor family gets to direct our interactions, as of course they should.
THERAPY:
Job is receiving weekly PT and weekly SLP therapies and we're so grateful for both of them! He's still rather delayed but is making great progress, and we anticipate being in weekly therapy for most of this next year and then perhaps spacing out our visits to twice a month or monthly for the next year after that.
I love that people ask about these things because they have all been such areas of concern, so that people are asking means they have been praying for us specifically on these issues. I can't ever express how encouraging that is to us.
Here's a bit of video I took earlier this week of Job invading the children's choir at our church Christmas pageant. He loved being on stage so much, he took every opportunity to run up there even when the sheep weren't really supposed to be on stage. It was a really sweet visual, however, of how this new heart has given Job such energy and an enthusiasm for life.
https://youtu.be/hlZ2NNbx5Ik
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