God continues to shower us in love. I'm thankful to Him everyday for the miracle he put in our lives. God showed his greatness again today. Blaise did very good at his appointment. The first stop was to do a Pulse Ox reading and Blood Pressure. The pulse ox is just tiny reader they wrap around his big toe. It's more or less like a Band-Aid with a cord, but Blaise had an absolute freak-out. Screaming and bawling hysterically. My first thought was "great, what a long day this is going to be if this is how he is reacting to this thing that doesn't even hurt". In order to get the proper reading he has to be completely calm. Both grandma's came with and between my holding, rocking, patting and shushing and their pulling all sorts of toys out and acting crazy, we got him somewhat calm. The first reading was anywhere from the 70's when he was sobbing to a high of 86. A normal is 100, and they prefer him to be upper 80's. We decided 82 looked pretty good. We then did his weight which was 21 lbs 10 oz, and that puts him right about the 10th percentile. I was hoping for a bit more from this picky eater, but they said he is still on his curve and weren't concerned. His height was 31 1/2 inches, which was about 40 percentile. We then went to his echo. This is basically an ultrasound of his heart, and he must lay still on his back for about 20-30 minutes. I was able to lay down on the bed first, and hold him on my lap. It started off pretty bad, with Blaise wanting to pull of the monitor stickers, and screaming and trying to get away and push away the wand. We were trying everything to distract him, then he magically saw the tv screen in the room with despeciable me playing and was glued to the screen and was calm for the rest of the time. Funny how he never watches tv at home, but loved it today! I"ll take it! From there it was back upstairs to re-do the pulse ox and try for a better reading. This time while the nurse blew bubbles, he stayed calm and the reading was officially an 82. I hoped for higher, but at least it's in the 80's. Dr. Danford read his echo, then came in to talk to us.
The official report is that all looks good. Nothing has significantly changed since the last echo. His right side of his heart is still small and not functioning, his left side is still pulling the weight of the full heart. The blood is flowing through the Glen shunt nicely. There is the proper amount of blue oxygenated blood flowing through his system. His unique problem area (the odd coronary arteries) are flowing blood to the heart wall effectively so it can pump. Based on all of this, and some of our answers to questions about how we think he has been doing, they gave us an all good report.
Dr. Danford said he doesn't need to see Blaise again for another 9 months, which would be the longest we have gone. Of course if something changes between then, we would need to go back in. By how it seems like Blaise is doing, they are guessing they wouldn't be doing the Fontan surgery next summer, but the summer after- the summer of 2015. We joked that we were waiting for the new Rainbow House to be finished (which happens in the summer of 15). He will still be getting his RSV Synagis shots all winter to protect against RSV. He said we should still be very cautious this winter with him and going out and exposing him to too much. We inquired about possibly taking him to daycare, and Dr. Danford felt like he would do okay with that.
Blaise and I went to the park tonight to celebrate him being a good boy. He was so happy by the end of the appointment he was trying to climb on Dr. Danfords lap. I think he could tell that Blaise has a lot of energy! To top of a perfect day, tonight after I put Blaise to bed, for some odd reason he started crying a while later. He usually doesn't do this, so I went up and got him out of bed and came down and rocked him for awhile. He was sharing the sweetest smiles with me, and it made me so happy with how blessed we are to have this angel in our lives. Thank you to our prayer warriors! God definitely hears each of our prayers!
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