We finally got the results of all the tests Caleb has been undergoing lately. It is good news! For those of you who pray and prayed, thank you so much! And thank you Lord for hearing and answering our prayers!
In regard to his heart, Caleb has a slow heart rate and arythmias due to his last surgery. This is a side affect of the surgery that should have gone away by now, but has not. The strange thing is that it did not start until a few months after his Fontan surgery. We pray and wait to see if these will go away just as they came - strangely and totally atypical for Fontan patient. These side affects usually appear right after surgery or many years after surgery. These can be fixed with a pace maker, but his heart rate is not slow enough to consider this intervention yet.
The best news is that Caleb does not have PLE (Protein Loosing Enteropathy). This is also a side effect of his last surgery that quickly leads to death, so we were pretty terrified when we heard "possible PLE". The tests confirmed that his protein is low, but he does not have PLE. We are giving him more protein rich foods and have started to include protein powder in his diet.
Caleb will have to be cathed after school lets out this summer to see what is going on and to close the fenestration (hole) they made in his heart during the last surgery. The main reason for closing is to reduce the risk of stroke and for his oxygen levels to increase a bit more. Hopefully it will get to 95% or more.
As far as neurology is concerned, his EEG and MRI showed that Caleb has slow brain waves due to having a small brain. The good news is that his condition is chronic and has probably been present since before birth due to his low oxygen levels and heart condition. His brain is growing with him, but it is smaller than what it should be. The neurologist wants him to have some more genetics tests done to see if he has any syndromes related to the brain. We are also aware that it is more likely for him to have seizures than it is for another child.
Overall, Caleb continues to enjoy life and we enjoy him and treasure every minute we have with him. He has such a great personality and sense of humor! Sometimes we even forget about his special heart. Not on purpose though, because our awareness of his disease reminds us of how faithful God has been to us in Caleb.