Before Nathan was able to see Dr. Cowley, he was tested for his oxygen saturations, had a blood pressure check, weight check, an EKG, and his first Echo where he was awake for the technician. I was a little nervous about the echo since it took about 50 minutes to complete and the child is required to hold absolutely still the whole time. That had potential to be a lot for a little 3 year old and even more headache for Mom and Dad! Nathan is such a trooper though and knows the drill. He weighed in at 28lbs (he had a bad week this past month where he was very sick and throwing up most of his food). His oxygen level was 93% which is EXCELLENT! I can't remember what his blood pressure was, but there wasn't any indication for concern.
The only problem we encountered with Nathan is that lately he is VERY into Superman (as you can see by the shirt that he wore that day.) He didn't want to take it off and it took more time convincing him to take his shirt off than it did to do the EKG! Once he had his shirt off though, the EKG went by very quickly with the expected results that a child in Nathan's stage of heart function should be at.
I was so nervous for the echo part of the visit, but it actually turned out to be pretty easy. Nathan was a little nervous as we laid him down on the bed, but once we had Toy Story on and the room was dark he zoned right into the movie and didn't pay attention to the cold gel all over his chest. Jake and I found watching the screen with the images of Nathan's heart very interesting. We could actually see where his pulmonary valve should be and the amount of backflow from the pulmonary artery as there is no valve there to push all of the blood to the lungs. It amazes me that a child can live his life without an essential part of his heart like that.
The results of the echo showed:
1. Severe pulmonary insuffiency
2. Moderate tricuspid valve reguritation
3. Mild mitral valve reguritation
4. No increase or decrease in the right ventrical from the last echo
5. Pulmonary hypertension
When we spoke with Dr. Cowley, he indicated there was no major changes from Nathan's last echo. That means that his heart has neither gotten better or worse. We know that Nathan's heart will not get better... we are buying time before there is enough evidence to support his right ventrical is in failure or getting too large and that he will need another open heart surgery to place a brand new pulmonary valve. Once a new valve is placed in Nathan, he will be having a valve replacements using the catheters through the groin every 3-10 years of his life. Jake and I are praying that in the next 3-5 years there will be enough advancement in the knowledge of pulmonary valve replacements that Nathan will not need a new valve put in using the traditional heart/lung bypass that occurs with open heart surgery. Nathan will also still need a tricuspid valve replaced in early adulthood.
We are very grateful for the news about Nathan's heart. It is also to our advantage that Nathan does not grow quickly which is causing less strain on his heart. Dr. Cowley was supersweet with Nathan. He drew a picture of Nathan and then placed him in a superman outfit. Nathan thought that was awesome and he is now referring to himself as Superman.
Yes, Nathan... you are our little Superman!
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