I'm absolutely exhausted keeping up with him but am so very very grateful to have the opportunity to be worn out from attending to his needs instead of, quite frankly, grieving his death.
Sometimes it's really hard to be content with all of the things we're being asked to do for him. I really want a break from all things medicine, to be quite honest. At the beginning of this week I was feeling myself slide into resentment because I had three days of appointments at SCH and therefore 9+ hours of driving Seattle traffic and childcare to figure out and I'm really annoyed at his tacro levels. I asked a few dear friends to pray for my attitude; for stamina and gratitude and patience, because I know quite well I can't spontaneously cultivate those things myself. I lose sight of the big picture - the big picure of Job's whole life, let alone the bigger picture of the whole of human life - and get bogged down in my daily troubles... Then I (sometimes) catch myself in my ingratitude and start preaching to myself... But sometimes I wallow for days first. At least right now it seems I ricochet from one extreme to the other, with little to no balance.
One particular daily trial is that his tacro level has been all over the place these last two weeks, from a low of 4 to a high of 26.4, instead of staying anywhere in the 10-12 range like it's supposed to. We're frustrated and concerned (and very sick of near daily blood draws), as are his doctors, though they are more confident we'll find the right dose than we are at present. This is his most important medication to manage his rejection and is essential to get in range asap. Too low and he's at risk of rejection (even with juat a few days of too low a dose!). Too high and the side effects start piling up.
His cardiology appointment a few days ago was fantastic though. The team is THRILLED at how well his new heart is doing! He looks and sounds great.
The doctor actually came into the exam room just as Job was racing across it, running away and squealing with joy as he played hide and seek with the big boys. She just started laughing and joked that was all she needed to see - he must be feeling better.
He has some mild tricuspid valve reguege still so we can't yet wean off his diuretics or the supps to replenish his electrolytes that the diuretics are stripping. So we're still on lots of meds, but as his heart grows to better match his body's needs then we should be able to wean down.
He really hates his sodium chloride though and I think it is becoming quite a problem as he tries so hard to refuse it and sometimes spits it up. It tastes horrid (can you imagine drinking an ounce of salt walter 3x a day?), so I don't blame him at all. Buuuttt he needs to take his meds no matter the taste. I don't want him to get used to gagging and refusing a med and then that turning into refusing all meds. We're going to try putting some of them in food this week but that gets tricky because then he has to eat all the food instead of just swallow a syringe full. Other meds make him queasy so now that he's taking everything orally we're essentially giving meds all day long, to space them out. It won't be sustainable long term but it's helping now while we have so many meds.
All in all, he's doing really well and we're so thankful.
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