All is going well at home. Besides me being freaked about the pig landing here (swine) LOL. We still have not gotten word about the kids pedi. office having the
H1N1 vaccine. Although Obama's girls are all set. Hmmm must be nice to be all set huh. Ha ha...
I am especially concerned for Avery his IVIG levels were low only a couple of weeks into the last infusion. Basically means his immune system is functioning at below average despite just having an infusion. I just booked another one for him for 2 wks and hopefully with the increased dose it will be enough for him to be able to fight off even basic bugs. Plus he is done with his toby nebs which is a medicated nebulizer (breathing treatment) to help prevent respiratory bugs. He is on it every other month and Nov. is his month off. So he will be running low on the defense side along with us not having the vax yet.
I just feel like the pig is looming over us. And I'm scared.......
I have to get some pictures of Avery in his big boy wheelchair. Will hopefully do that soon.
Hope everyone stays healthy.
3 comments:
glad everythings a little better. Hope Avery can keep his immune sysem ^. Doing a new case with TPN/lipids,cont g-tube feeds, ileostomy, so there is rm on a 4 mo old. Do you or does anyone have the Gemstar pump? We hate it. Takes forever to prime the air out. Big bubbles stay in the filter even tho when primed we hold end of tubing upside down and clamp end until filter is primed. Can't get answers from NEHT except one nurse said they are having trouble with these filters collecting air. Even the maker of the co. did not help. It's ridiculous and frustrating! Dad is my priming partner! We are following directions on the tubing for the pump but there has to be an easier way. We had to prime so much the baby wasn't getting enough lipids. Pharmacist finally would add more overflow for us after calling MD. Help anyone?
Thanks,
Elaine
Wow what a nightmare Elaine. We have the bodyguard pump and have never had issues with it at all. Can I ask the baby that has an ileostomy, do they have issues with the colon b/c Avery does not at all. Try to switch to the bodyguard.
Whose your supply co for the pump?
The baby was born w/fissure in wall of abdomen which remained open. Had all but 5% of intestine removed-that's why TPN & very slow cont. g-tube feeds. Will eventually need transplant. I'm with you, don't rush into any ileostomy.
ES
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