Someone’s thoughts and prayers have been heard. Lennon is off the breathing tube, but he is still struggling to breathe as he is still so full of fluid on the inside. He has a mask on his little face that is a bit big, but gives him the oxygen that he needs. It appears that his body and in parts his mind, simply are taking their time to heal and recovery from everything he has dealt with so far. Every now and again his eye will peek open and then he goes back to sleep, his hand will move in hopes to find another hand or his beloved cat that he has had since he was three months old.
The other day, I was asked if I regret the decision to have the transplant. I don’t think I do. The alternative looks far worse than what he is dealing with now. Living with an unknown type of Urea Cycle disorder, without indication that the diet and medicatio appear to be enough could have a much different outcome. In reality it could have meant more brain damage, it could have meant coma, or it could have meant death.
I like the alternative of life much better and if I am to trust these doctors as much as I have so far, well then Lennon will be ok.
All of his numbers (liver, kidney and blood) look good, probably the best they have been. His ammonia has been 31, which is the lowest that it probably has ever been in his lifetime. One has to keep the faith and hang onto something to belief, to belief that he will be ok, he will walk out of here a whole new little person.
I have to believe that he is destined to be on this earth for some time and that it simply is not his time to leave. Not now and not for awhile. Without these thoughts, faith and trust I would not be able to hang on, and my demise would be his demise.
The last five weeks probably have been the hardest in my life, in his life (maybe) and in anyone’s life affected by this little guy. It gives to show that every day matters (in the words by Danny Gregory, its also a book title and a good book too).