We are at the house now, the boys are still napping, I just woke up! We have had a good, but very busy two days. The plane rides were good and Sam loved them! We had an hour delay once we were on the plane in Detroit, but as soon as wee took off (or "go fast!" as Sam called it) he slept the rest of the flight. We got some dinner when we got to town and called it a night. We had a clinic day today starting at 7:30 this morning, which included X-ray, bloodwork, vitals, echo, meeting with our cardiologist and a few other people. It went very smoothly, just busy and tiring. Sam sat in my lap for his bloodwork and we held his arm out, only two sticks to get his labs today(which isn't bad for him) only later to find out they clotted before they got to the lab of course. No repeats today though, will just do them when he's asleep in the morning for his cath. One huge difference this time already has been his talking...it was much harder to take hearing him say "ouch!, owie, and that hurts!" but I couldn't keep from smiling because I was proud of him using his words :).
It is priceless how much coming back to the same place and the same wonderful people means to us. Sam recognized his cardiologist, whom we love!!!! Also we went up to 8 east, the floor he is always inpatient on and visited, his favorite nurse was there today, Christine. She literally started dancing and tearing up when she saw him...and he recognized her! (we had been looking at pictures of her on my phone lately) No one could believe how good he looks and how big he is, especially how tall.
Now for the amazing news you have all been not only waiting, but expecting to hear....Sam will have a cath tomorrow, he has to be at the hospital at 11 am (we are an hour ahead of Kentucky) and that time is a little up in the air because we are not first case there is no way of knowing what time the cath will actually start, it depends on what time they finish with the kiddo before Sam. They are going to be doing mainly measurements and possible interventions if they see fit. Dr. Marx (our cardiologist) said he needs to see the results from tomorrow's cath before he is convinced Sam needs surgery. He said that some pictures, referring to his echos, his aortic valve look pretty bad, but in other pictures it looks pretty ok. He is curious to see if higher pressures on the left side are making it look worse than it really is. So our prayers are working!!!!
The other big new of the day is Dr. Marx is completely on board and in agreement that we have to get to the bottom of these GI issues! Shew!!! What a relief to feel like someone finally understands and will help us push to figure something out. (not that our cardio dr at home didn't, but we were getting nowhere with GI in Louisville) I also requested a certain GI dr that was recommended from another heart momma that she loves and was not dismissive about her kiddos problems either. Please be praying this is our gal, the one who will understand how big of a problem this is and be willing to do what it takes to figure this out, her name is Dr.Rosen. Here are some pics from our journey so far...
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