Another night at UNC...
I'm doing a marathon stay with Brett right now - I call anything more than 24 hours a "marathon." Actually, this is only my 2nd overnight stay out of 7 nights, though, thanks to my "angel mother" who did a SUPER marathon and stayed 4 nights!!! Wow!!! Thanks mom!
Brett getting ready to go to the playroom - still on contact precautions
Brett has gained some weight (from 8.8 kilos upon admission to 9.42 kilos yesterday). Tonight the TPN will be turned off and by tomorrow morning he will be at his full feeds. Then we wait to see if he "tolerates" this and continues to grow, or if he starts "dumping" the nutrients - thus the weight gain would stall. Only time will tell. What we DO know from this admission's stool cultures in addition to last month's stool cultures is that he is absorbing proteins and carbohydrates just fine - it's the fat that he isn't assimilating.
Brett in the playroom - the poor girl had to roll everything around behind him!
It amazes me that God has designed our bodies just perfectly and that sometimes if one little thing goes wrong, it can create a disaster. Even though we complain that we get fat when we eat too much and don't exercise, we can be thankful that our bodies do what they are supposed to do. When your body can't absorb fat, it's really difficult to stay alive and grow without drastic measures. Also, an important part of cystic fibrosis management is regular physical exercise! This of course means even more calories are burned and less are being used for nutrition.
A room full of toys, and all he wanted was to push a chair around!!
Brett's med tower
Brett gets over 2,000 calories per day via tube feeds and dietary supplements, and whatever he eats is additional. His special formula is pre-digested, and the extra fat we give him doesn't require pancreatic enzymes to digest. And he STILL has trouble gaining weight. We're thankful for the extra support options like TPN, but hope to not use it for too terribly long. Hope to be able to bring him home sometime this week.
Wow, that is some meds tower! And I can't believe they don't make little child sized sanitized yellow gowns...poor guy! Looks like in spite of it all, he is a champ when it comes to play, even if it's with a chair! Hope you can go home soon.
ReplyDeleteMy goodness!!! For a child to have as many health problems as he does, he sure doesn't have any problem 'entertaining' himself when he feels good! Like Linda says, even if the entertainment is pushing a chair! Maybe that will help strengthen his thighs . . .?
ReplyDeleteWe need to thank God for giving some women, such as the one in the playroom with Brett, who are willing to push around his unbelievable tower just so he can play for a while!
Yikes! I found out I can't go back and edit a comments . .I meannt to say in my last comment, "Thank Godd for giving some women enough patience" . . .
ReplyDeleteI'm with Linda...where are the child size yellow gowns?! And I agree with Norma...bless that woman for doing what might seem like a small and unimportant job to many people...but oh so very important to Brett!
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