Macsen's team thinks he should go ahead and get the fontan, the 3rd surgery to reroute his deoxygenated blood from the lower part of his body to passively make its way to his lungs, taking some of the load off his heart. They will just " watch him more closely" for fluid issues bc of his extra lymph he perpetually carries around. They don't really understand the lymph issues he has and are just now making a connection with too much lymph and serious complications from the 3rd surgery. So I am nervous about this surgery - i am glad they feel he is well enough to do it but worried our lack of knowledge is very great. The extra complications are plastic bronchitis - lymph draining into lungs solidifies and creates casts that can choke the child if they can't clear it. Or protein losing entropy which is when lymph drains into the intestines blocking the absorption of protein, damaging the liver and is at this time incurable and fatal. I look at my sweet boy - playing with his trains right now, looking for his sisters to play with him, and I endlessly worry this surgery will be the one he can't overcome. He's done so well so far but that is by no means a guarantee he will do well with this one. Today one of our little heart buddies is going home, finally, almost 10 months post fontan. His family has been through hell - watching their walking, talking little boy suffer a brain injury after this surgery and fight like a warrior to lift his head, stand, and try to regain some of the skills he had before this surgery. We don't have a date yet - I anticipate it will be in the fall before we can get a date with the surgeon we want.
We have sent all Macsen's info to Boston Children's for a second opinion.
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