A Quick Update

It seems like we have so much going on and I really think it's all administrative things for Lydia.  The girl needs a scheduler, a secretary, a laundress, and probably many other roles to fill.

I'm working on collecting all the things for the blended diet to begin.  Her feeding pump malfunctioned this morning so that expedited getting the new pump today.  I've been working with CMH Home Health and our BCBS Case Manager to see if we rent to own the pumps and can get the new one through insurance.  The alternative is to purchase it for $800 to $1200.  Please come through for us BCBS!  

I was put in touch with and met the kindest lady the other day that gave us 2 cases of Compleat Pediatric - that's what we'll use as the base of her blends.  This is a mom with a 2 1/2 year old that has a trach and gtube.  I didn't know how good it would feel to just jump in and start talking to a stranger about things in common.  She knows!  She gets it!  We stood in her front hallway for close to 30 minutes just chatting away about trach life.  

Just waiting on the Blendtec.  The super fancy blender that is going to blend the heck out of whatever we put in it.  Vegetables - pulverized!  Fruit -pulverized!  Meat - pulverized!  Real food blends will help with so much.  It can help with tastes and smells.  It can help with secretions and mucus, therefor spit ups.  It can help with poop...can't everything?  We talk poop a lot.  

Her cap trials are going well.  She can wear the Passy Muir Valve all day with no problems.  She can wear the cap for 30 to 60 minutes at a time, a couple times a day.  Once Lydia can wear that all day we will schedule a sleep study at CMH.  If she can wear the cap overnight and keep her 02 levels above 92 o 94, we're golden.  From what I understand, she'll then go home and wear the cap overnight to continue to monitor her 02.  

Then, it's gone!  Goodbye trach!  Her ENT doc thinks by the end of the summer and has already put in the order for the sleep study so we won't have a hard time scheduling it.  EEK!  No nurses.  No living room bedroom.  No crazy emergency bag.  No ER visits - at least not for that!  No nurses.  No nurses.  Shoot.  Daycare searching here we come.  If you happen to know an in home daycare provider near us in Olathe or near the library the will take kids with g-tubes and blends, give me a holler...cause you all just happen to know those people.  Ugh.  YAY!  No Trach!