We had a great time and saw a lot of great friends! We were able to meet up with our favorite nurses, NPs, doctors, and surgeon! We also were able to meet up with some of our great heart buddies, their families, and even met some new ones! It was a great place to connect with new moms and heart kids and invite them to join our Mended Little Hearts (our heart support group) and hopefully connect more with them in the future! :) I wish we were able to spend more time there and actually take pictures with all these people, but unfortunately we had to rush out to Callie's soccer game. Oh well, next year we'll make sure to stay for the entire time!
Later that night we went to haunted houses. We took Callie to her very first ones! I absolutely thought she'd be terrified and not sleep, but amazingly she did great! She wasn't scared and had no problems afterwards! :) Yay! We'll be hitting more this month!
Last week Ethan had a cardiology appointment, echo, blood draws, and supposedly a meeting with wound care. We had blood work in the middle of the week and it was VERY rough. They had to poke around in his arm 7 times to get the blood to come out! He never cries (he just whines and gets anxious) during his blood work anymore, but this time he was in tears and crying begging them to stop hurting him. I was almost in tears trying to convince him that it's okay and it's almost over. :'( That lab work came back showing that his INR (the thinness of his blood) was way too high - I think it was 9 something. His normal range was 3.0 to 3.5. The docs called and I let them know we were heading in anyway due to his appointments. They said "Don't get in a car accident, but get down here" LOL. We showed up and did another round of blood work (this one went much better!). The results for this test showed his INR at only 4.0! Big relief. That's still high, but much better than 9! We held his coumadin for the weekend and did another check on Sunday. That showed 1.2 (now too low) so we restarted the coumadin and will check at the end of the week. :/ Hopefully this gets under control and we are in a comfortable range quickly!
Back to the cardiology appointment. His oxygen saturations were still normal for him. He was at 68% in the office. We were hoping for better after his last cath, but it seems to be still around where we were before. Maybe it can improve as he continues to heal though.
His echo looked great - the artery is still open and clear with plenty of bloodflow! :) Dr. Golden (our cath doc) brought up some things he has been thinking about since the cath. He thinks that by putting in a covered stent (like the one that we used in this last cath) down in the pulmonary artery that keeps clotting off, the artery won't be able to close in on itself anymore! He thinks that if it works as he plans this could potentially significantly cut back on the number of caths that we need! We can really push the time between caths out - which would be nice since we're doing every couple months right now! He needs to discuss it with Dr. Zahka (our other cardiologist) before planning much more, but he said "Don't kill me, but I'd like to do this in the next couple months." *gulp* Really?!
And lastly we addressed the burns. Wound care didn't show up, but Dr. Golden and Dr. Stewart (our surgeon) checked out his butt burn to see how it was healing. Dr. G mentioned that if it doesn't start healing up better we should see dermatology and plastic surgery to get it taken care of. He said he has some dermatologists who owe him so we can get in right away. I also have a dermatologist we can get into right away, so we'll see how things go. :) Right mom? His butt still looks pretty much the same (maybe a little better) but is starting to get less tender. It still hurts him when touched but it's not nearly as bad as before! We also got his hair cut. When we did that we found that the clump of blood that was in his hair at the hospital (the one we thought was dried blood from his bleeding incident) was really a burn. :( Yes another one. He now has a bald patch on the back of his head. We're going to get this checked out and hopefully we can get hair to grow back there! His ear burn on the other hand has healed pretty well. :) Thankfully that doesn't seem to have scarred and doesn't hurt him anymore.
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Lastly, the kids started physical therapy and are doing well. Hopefully this can get Ethan up to where he should be and he loves it so far! :) And the therapists confirmed that he is a lefty kicker, batter, and golfer but a mixed thrower and a righty writer! He just can't make up his mind LOL!
I'll keep you all posted when I get more info on the cath and his next INR results. Please keep us in your prayers for continued healing and everything! We have a pulmonology appointment tomorrow, so hopefully that will go well!
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