Tuesday, April 20, 2010

Tubeless and Good at Drugs




Lulers gets her tube out, we put it back. It is a regular occurrence and a two person job. I was alone yesterday morning when she woke up sans tube, James wouldn't be home til late evening... so I gave her meds orally with a little trickery (syringe with water) in between syringes of drugs. She loves water but shouldn't have it much because of the empty calories. Long story short she's doing great with her medications by mouth so maybe we will drop the hose sooner than later. I was thinking we'd have another year with it....

The only other reason for keeping it is to get enough calories in her per day which I track closely. Whatever she wouldn't take by mouth we'd drop down her tube. she doesn't want to drink anywhere near the amount of ounces she should but we are working hard and being creative. Chocolate milk, strawberry milk, vanilla etc. etc.

It will be so nice for her not to have a tube up her nose and down her throat, dangling from her body. It will be nice not to have to plaster her cheek with tape. It is nice to see her without it only if it is temporary for now. James wants me to put one down his nose...just to know how it feels. Pictures to follow.
Note to future LuLu: tubeless is good, topless is bad. Anti-rejection drugs are good, the rest are bad. I love you more than life London.
xoxo
lizzie
alpha-1, liver mum

9 comments:

Rogers Neighborhood said...

Oh how I miss Lu. I miss you to Liz. I can't believe the progress she is making. She is amazing. You all are in my prayers every day. I love you. Tam

Douglas Lai said...

Yay for no tube even if it is only temporary. I can tell you from experience it does not feel good to have a tube up your nose and down your throat. (I had one during surgery and for a short time after to suction out stomach contents.It was aweful!) I have some extra long ones someone gave me that you can use on James. ;)
Erica

Anonymous said...

Glad that LuLu is doing so well, I bet it is a nice change to have that tube out of the way. She truely is a remarkable little gal I can't believe how well she is healing. We need to talk soon Belle had a check up with Dr. Book and is doing really well right now. So at this point in time our transplant will be down the road a little ways, but Brad and I still have loads of questions to ask you
Kayli

allieb said...

love love love little lu! it was so good to see her running around happy as can be : ) hope for her sake & yours she gets rid of the tube for good soon!

Sarah said...

she looks so different! so full of life-- just look at that hair! ;) go lulu, go!
unfortunately we won't be making it to SLC this summer... hugs and kisses will have to wait 'til NEXT summer.

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The Hunters! said...

wahoooooooooooooooo!

Jo Lynn said...

Yeah, how exciting!!! What a doll she is!

jessicalangprice said...

YAY for being tubless!! What a big step, and what a relief!! When things calm down a bit (haha) let's get together. We just moved in yesterday to our new place and I have a list for James...I need your combined talents!!

 

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