Here's a short video of Emeline and Ava. I do not recommend doing this at home.
Sledding off the bed?
Hey! Ava was up all night Monday coughing. Last night was much better. Her and Lexis do breathing treatments together it is really cute.
So the girls and I went to Ava's doctor appointment yesterday. It went well. He thought she looked treally good even though she had a cold. Her lungs sounded clear to him. It was all in her sinuses. She waited patiently while we did the usual clean/sanitization of the room and then down she went.
I brought the good ol' standbye "bubbles" for our entertainment! Ava loves to watch bubbles. Emeline tries to catch them with her mouth. (Only my children!)
Dancing and catching bubbles, now that is Miss Ava!
This is Lex and Ava playing Guitar Hero this afternoon. A little sister love!
So the plan is to cut Ava's TPN, central line nutrician, down by 50% and NO LIPIDS! Lipids are the fat contents in the IV fluids. (HUGE YEAH for Ava!) SO this leaves her IV feeds at 280ml's over 7 hours. I decided to have them cut the calories and not the time. Well we did take an hour off the running time because at 8 hours the rate would have been 35 and that is just too slow for her. I'm hoping she won't have a problem with the 40 it is set at now. When we first started her on TPN at home her blood would back up in the line due to her heart pumping faster than the flow rate. Boy the rig jobs I came up with....first I would lay her on the floor and put the IV pole on our high king size bed! Then it worked! But it was a huge pain!
So we increased her Elecare to 27 calories per ounce. She was at 24 calories. I will continue to try and up her rate so that she is getting closer to 900 ml's per day. Right now we are at 600-700 ml's a day. She is taking in about 6-8 ounces of water on her own by mouth. They are concerned if we stop her TPN will she be about to keep herself well hydrated? This is "the big" question.
The next step, which will most likely be in 2-3 weeks, is to just give her IV fluids as I see necesary, maybe 3-5 times a week! Depending on her urine output. I was so excited about our weaning off the Hickman. I really ccan't wait until the day it is removed. See our thinking is that when you body gets used to the IV fluids it then becomes a way that the body senses it doesn't need to become more hydrated, therefore not signalling the brain to tell one it is hungry or thirsty. So when she comes off of it she may be thirsty and hungry a tad bit more. "Fingers crossed and lots of prayers!"
As I sit here and think about all my Ava has been through it brings tears to my eyes. How and why? are not questions I ponder a lot anymore. It is just a matter of getting her healthy. I was just telling a Mother the other day that if only we had to worry about regular things, like bundling up our kids warm to go enjoy a nice walk out side, or which daycare is best. No our worries are much more complex but perhaps someday our lives will become more "normal" whatever that word means! AND I'm not trying to demean all you Mom's out there that have to deal with small things....I only ask that you take a second out of your busy life to thank God for allowing your child to be healthy......to NOT have to know my daily struggles. (Not that Ava is a struggle, she just requires a lot of extra attention.)
I know I'm blessed. God gave me a wonderful husband that doesn't mind working two jobs so that I can stay at home and take care of our children. (I know how rare that is!) We just try to make life as simple as possible.
One more thing.....I'm so exicted. My wonderful cousin Mindi pointed out a big opportunity for me....a photography class! I am so excited. It starts March 31st. I will get to get away for 2 hours a week! I'm sure Brian is all up for the challenge.
Again thanks for your love, support and especially your faithful prayers. I know because of them Ava's cough has gotten drastically better today than yesterday. I give God all the glory! Love to you all!