We started off the week with a blood draw to check Ethan's INR. It came back at 2.1, so that is perfect for us. No Coumadin adjustments needed! :) Now we have another month until that needs to be rechecked.
Wednesday we headed downtown for a cardiology checkup. The appointment went extremely well! Ethan had an echo, and we even had a resident doing his this time. He was still learning and Ethan was his first complex case. LOL it was interesting to watch him try and navigate Ethan's anatomy! He's definitely not an easy echo for trained techs much less a new one! :) The woman training him was very helpful and he did a great job. Overall, his heart looks good (for him)! No bad changes or anything alarming, so we're so happy about that!
We did another round of labwork at this appointment. Wednesday's INR test came back at 1.7. That was a little unusual to change in just 2 days, but still it's close enough to where we want it so we're not concerned. Another test we ran was his BNP. This test measures his level of heart failure. We've decided to start monitoring it a bit more closely since his levels have been changing recently. A normal healthy person's test would be below 100. Basically the higher the number, the more stressed out the heart is. Two tests ago his results were 870. Last test showed his number was around 1400! We definitely didn't like that big increase, so needless to say I was very nervous to find out his current BNP. But...the results came back at 675!! I couldn't believe it! I actually wondered if the blood work was switched with someone else, but I'm so thrilled! LOL! Ethan's oxygen sats have been steady in the upper 60s to mid 70s, so we're definitely happy with that still. And another amazing thing...Ethan has gained 5 pounds since August!! WoW! I am pretty much contributing it to the fact that he's off his Adderall (it decreases appetite) but he's still taking his Periactin (headache medicine that has a side effect of appetite stimulation). It's very exciting to see him actually putting on some weight! :)
We return in 3 months for our next exam. Basically, the plan is to watch and wait for his heart to show us he's ready for surgery. Once his oxygen sats go back to the lower 60s and/or his bloodwork starting showing more heart stress we'll take the next step. The next step will be a pre-surgery cath, and then open heart surgery to replace his conduit. So far everything looks good, so hopefully we can wait a while until surgery! :)
We've also started his therapy for anxiety. Hopefully we start to see some improvements and he can learn some better coping skills. We are also starting up his new physical therapy early December. We are trying to do occupational and his extra speech therapies at the same location, but they're not sure how long it will take to get us in the schedule.
School is still a big struggle, but we're having some breakthrough good days showing up. Ethan started his medicine a little over 2 weeks ago, and we just did his third and hopefully final increase in dose yesterday. We saw a little improvement in his tics this past week, so hopefully this next increase will really help out. At least Ethan has mastered his meds. He can take all his pills in one handful! I'm pretty impressed with his skill! :) These are his nighttime meds, not including the liquid med.
I'll keep you all updated as things progress. Please keep our heart buddy, Micah, in your prayers. He's currently inpatient (and has been for over a month) waiting for a heart. He can definitely use your prayers, as well as some other friends who are recovering from transplants and surgeries. :)
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