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Oct. 30, 2009
Superman
Not much to report from a medical perspective. Most of Noah's labs are either normal or at least showing daily improvement. The two biggest "off" labs are his triglycerides and his hemoglobin. His triglycerides are usually in the 40-50-ish range, but they are continuing to climb with last night's labs showing triglycerides well over 500. Those high numbers are happening even with his lipids (fat portion of his TPN) being reduced, so his lipids are currently discontinued. His hemoglobin has been hanging out at 8.1. Since he usually tires easily with a hemoglobin below 10, this low number is almost certainly at least partly to blame for his severe and persistent fatigue.
As I write, Noah is getting an infusion of Venofer (IV iron) in the hopes of bringing his hemoglobin (and total iron) up. If it doesn't work, another transfusion is the next step.
OK, having gotten the medical news out of the way, how about some Noah news . . . he got to go trick or treating today! Now, our family has never celebrated Halloween, but there was no way I was going to turn down the chance for Noah to get out of his room and have a little fun. There were trick or treating stations all over the 5th and 6th floor, and the children got to stop at each station for all sorts of goodies. Noah raked in playdough, bubbles, stickers, crayons, coloring books, stampers, all sorts of small toys, and more. There were also bags hung outside each child's room and all sorts of volunteers came by throughout the day to fill those bags as well. Even though he rode in a cart, just the business of being out of his room and doing something new REALLY wore him out. He took a long nap and is currently in his bed inspecting all of the loot now that he is more rested.
Noah dressed up as - you guessed it - Superman. Two very generous blog readers each sent him Superman suits after I posted that we couldn't find one locally. It's a good thing he got two, because while he was home he was dressing as Superman every day LOL and it was a blessing to be able to wash one while he wore the other!
The other bright spot for Noah has been that somehow some ladybugs made their way into his room. He's been asking me to catch each one that he sees, then putting them into a plastic tub. He loves to look at them while they are in the tub, but it seems to scare him when they fly, so we finally put one in a little specimen jar so that he could hold and examine it without worrying about it flying away. He has really gotten a lot of pleasure out of these little ladybug encounters and it does me good to see him smiling.
I thought it might do you good to see him smiling too, so I've got some pictures for you. Keep in mind that he had a lot of swelling and his infamous ultra-red eyes and lips several days ago, so his lips and some of the skin on his eyelids have been cracking and peeling - but he looks great considering how sick he was a week ago!!
Take a look at that smile - it might not be a BIG smile, but it IS a smile!!!! Oh, how we were missing that smile!
Sitting with his "ladybug box" and his Daddy
Taking a VERY close look at those ladybugs.
Working up the nerve to actually TOUCH a ladybug!
Here's another smile - can you see the ladybug in the jar?
Noah (errr, Superman) trick-or-treating
All worn out - raking in all those goodies is HARD work!
I think that they are going to start some feeds through his g-tube (feeding that goes into his stomach) tonight. It's just going to be a little bit (a teaspoon per hour) of Pedialyte for now, with the hopes of working back up to some formula over the next few days. Please pray that the feeds go well and that the Venofer can bring his energy level (and smile level) up quickly. Oh, and we are going to be doing a dressing change in a little while using a VERY cool new kind of dressing that the hospital is trialing. I'll let you know how that goes.
Blessings,
Kate
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Posted by Susan in Va 
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Oct. 30, 2009 - always praying for Noah and you
~Guinever