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Thursday, May 2, 2013

My poor boy...

I can't imagine anyone who is reading this isn't already familiar with what's going on with Zion, but I am going to go ahead and give some background. We are back up at Riley with a bout of pneumonia and the flu..so far this is day three here for big Z, and as of yesterday there was a chance we could go home today. He had kicked the fever, was going 4 hr rounds of albuterol nebs, percussion vest, and cough assist treatments...and he was looking good. I stayed up until 3:30 watching him sleep while becoming consumed in a book...and at 6 this morning we woke up to another round of treatments. For those of you who aren't familiar with a percussion vest it's essentially a wrap around his chest that pumps air in and out of it in an attempt to loosen any phlegm inside his chest to assist in him coughing it up to clear it all out. It's 15 minutes of hell for him...the wrap gets in the way of his g-tube, along with the other wires connected to him...and it literally just beats him around. I can't imagine what it feels like to have to do so many things that he can't completely comprehend, most of which are extremely uncomfortable, with his mommy or daddy trying to convince him it's for his own good that he do them. Every parent inevitably at some point has to force their child to do something they know is best despite the discomfort or pain it's going to cause their child, but at this point I think Chelsea and I have done enough of that for a lifetime. What renews my strength as a dad is the fact that Zion was blessed with a comprehension level above most kids his age, and along with the routine comes understanding an ability to perceive that this crap actually makes him better. A friend of mine who has dealt with issues similar to Zion his whole life put it into perspective when he said that I need to look at the discomfort as life savers for him. Jake, you are an inspiration and a source of hope for me, and I want to thank you for giving an example of what it's like to rise above the bad and to see the good in life all around you. You know firsthand how difficult all this can be, and as Zion gets older I hope he too can shed light and hope to kids at the age he is now. I'm glad I can call you my friend and have been able to see make the best of a difficult diagnosis. I ask you all to continue to pray from Zion...pray for healing from these two bugs...pray for a cure for SMA. Hopefully we can still go home today, and I look forward to seeing you all soon.

Much love,
PH

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