Monday, March 4, 2013

Day 120 Fish Oil Study ~ Getting ready for surgery

Whew another rough night!  This is how it goes, the nurse gets her all settled and her food pump on and her meds given, she falls asleep....I go in at 9 pm to give her the next med and to change her diaper and all heck breaks loose and she won't calm down all night!  Last night her Blood Pressure got dangerously high, I think it was like 147/130 That is BAD news, when the top number and the bottom number are high and close, you can have a stroke.  I gave her the meds and it came down but she never really slept and neither did I !!   It's harder taking care of her at night by myself BUT in one way I'm comforted that I know I'm not making any mistakes or stressing her out.  I know the things that bother her (like too much touch, bright lights, too much talking, etc)  so I know if she is having an issues, something is really going on.  My nurse talked to our wonderful pediatrician about it and he just moved her meds around a bit.  At one point, every 12 hours was too close to give her BP meds because her BP would be too low for the meds but if you waited too long, then she'd go too's a balancing act for sure!  So they are trying a new time to see if that will help her. 

 Today we went to see the ENT, waited in the lobby for quite some time.  When I got back in the room, first our medical supply company called and I had to deal with that as we HAVE to get her new gtube.  Then the hospital called right when the doctor came in and she walked out rather in a huff.  Then as she was coming back in the door, the hospital called AGAIN to change the time for us to be there and she got angry at me for taking the call!!!  That did not go so good!  I told her that she had wasted MY time in the waiting room (not to mention put Selah at risk with all the kids in there) and the hospital was trying to get her details scheduled for the surgery.  (my nurse mentioned after we'd left that if the doctor had seen us on time, then we would have been done with her BEFORE the hospital called)  The doctor was young and had a resident with her so I guess she needed to "show off" her "God" complex......I told her it wasn't like I was on the phone with my girlfriends deciding what time to meet for NOT mess with me when I've not gotten good sleep for 4 days!!!!!   I was NOT impressed at all with her.  I don't think I've ever taken a call in a doctor's office BUT these were both extreme time sensitive situations and I felt she should have worked with me.   She asked me if I thought we could work together and I told her "I doubt it"  LOL  but I let her exam Selah and she did say her trach was in good (she scoped her) I was proud since that was my first unassisted (at all) trach!  I did it with no one else touching it.  In the hospital they teach us to do it with 2 people but I liked learning how to do it by myself, what if I were alone?   It gives me more confidence!

We did get a list of providers who maybe able to do the kind of speech therapy that Selah needs to get off the trach:)

So tomorrow Selah's surgery is at 10 am for her feet/ankle surgery.  A friend from church is going with me.  I don't know if Selah will be admitted overnight but I"m thinking she will.

A good long term friend who now lives on the other side of the world from us, sent us a gift for Selah.  It was just what we needed to buy her an extra gtube to have on hand in case we ever have a problem again.  Insurance will only pay for her one every 3 months.  We think the fish oil we give her eats away at the plastic bubble and causes it to burst.  The bubble is what holds it in place.  There was enough left over to order a kids size blood pressure kit.  I've been using an adult electronic one but have to return it and they don't fit as good for someone as small as Selah.  The adult one would measure up against the manual one but the manual is the best kind to have and cheaper.   Friends are GREAT:)  And God is good to take care of the details of the things we need!

Don't forget about Patrica/Sally and her grant!  If you can give to her grant since a family has just stepped up for her please do!  I want to see her home as soon as possible!!!!!!!!!!  Look at this sweetie the day I met her and fell in love....that is a EIGHT year old little girl with Downs...  she needs a mama and papa!

Thanks for your prayers for Selah and your prayers and giving towards the orphans of this world!

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