Today is the day. I can't sleep any longer.
Alex has started TPN, which is a nutritional supplement through his line. He just was not eating enough. It isn't a long term solution...hopefully we can get him to eat enough to keep his gut working, and avoid going on a feeding tube. If not, then the doctors insert a tube down Alex's nose into his stomach, until he feels well enough to eat.
There is another little boy about the same age as Alex, who is also having his BMT today. I haven't talked to his family much, so I will just call him Max for now. Max's older brother is his donor, and he seems so humble about what he is going to do for his little brother today.
Alex and Max would pass each other on stretchers going to and from radiation. With HIPA rules in place, none of the staff can tell one family about another, even if they are sharing the same experience. So we 10 South families learn to tune our ears to listen for any similarities between our children to help us feel less alone in this place.
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I just wanted to let you know that I have been trying to send good vibes your way during those tough last days but especially today! All four of you are in my thoughts!
ReplyDeleteUnbelievable what modern times can do. To think that someone from my side of the world actually donated something that was shipped all the way to your side of the world in probably just this little container that they display on shows like Grey's Anatomy and then to think that this container (or better: the content of it) will save Alex's life - that's just incredible.
Like I said, thinking of you all the time but especially during this hard day today! Take care!
Love, Jenny
Another birthday! Praying for Alex and your family today. Sure do love you!
ReplyDeletePlease accept my best wishes for you and Alex today. I understand about the exhaustion and relentlessness of it all; it will go on for quite a while more but you can do it - you both can.
ReplyDeleteI'm just bummed that I'm apparently not his donor. :) Good luck today.
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