OK. 6 month check up today. The heart surgery that we thought was going to happen pretty soon ...isn't. Lets start with Tucker has grown about 1/4 inch and has gained about 1 lb. We actually got a good blood pressure because he was napping. No EKG was taken because he wouldn't quit pulling the things off and I didn't have enough hands to hold both feet and hands away. The echo showed pretty much the same as the last. Heart function is stable, little bit of leakage.
So, the surgery you ask? Well, the third and final step in Tucker's heart defect is making his bloods become separate, instead of mixing as they are now. THIS surgery will more than likely not happen. I guess it is thought that it will not improve what Tucker has going on now with his heart. I was told all that would change is his coloring, the oxygen in his blood. He is coping very well with his heart now, he is very stable. SOOO, he grows with his heart and deals with the lack of oxygen as he has done so far. I guess with the final step, which is the Fontan procedure, you need pressures in the lungs to be just right. Kaine thinks he will have a very hard time getting Tucker to be a good candidate based on that....he has two things against him 1. Downs and the floppy lungs and airways and 2. Hypo plastic left heart syndrome.
He did say to go ahead and have the tonsils and adenoids removed because it would increase his oxygen and relieve some airway issues. He would need to have "heart anastasia" but other than that nothing stopping us from doing that. He also said not to wait on getting the GTube removed. Get with General Surgery and work with them. We have a follow up with them which I will keep to discuss that plus the skin around the button is not improving. So that appointment is next week.
I am still not comfortable with having the answer or lack thereof I received today on why and what happens with no final step with Tuck's heart. I have searched the Internet and have found nothing saying what happens IF the fontan is not done. I know it effects the oxygen in the blood, which in turn effects his stamina, stronger chances of stroke, his blue color....but in the long run what does it mean. Will his heart last as long without the procedure as with the procedure? Dr Kaine did say that IF we did the Fontan and it didnt work there was then nothing else they could do for Tucker. I meant to ask if that meant that without it there are options if Tucker has problems down the road with his heart. Darn.....I even wrote questions down.
1 week ago