Tuesday, June 30, 2009

Tube Drama!

Two more days until the first of 2 big departures! The boys are so EXCITED to go to Disney! As usual I have not come anywhere close to being ready to go! This happens every time! Every time I manage to pull it together and board the plane on time with everything we need!!! As long as I have all of Makenzie's medical stuff I try not to stress about the rest! I would drive myself insane! There are stores in FL and that is that!

Kaleb got his cast changed again on Monday and his arm is looking good! He had a waterproof cast put on just in time for our big adventure! It looks great! He asked when we left if we could go to the pool!!! Hmmmmm think he likes the pool?!

I had made an appointment for Monday to get Makenzie's GJ tube changed out as well so that we didn't have to go back again. Her tube needs to be changed every 3 months or so and it was that time! I didn't want to take any chances of it breaking in FL but for sure not Costa Rica!! However, I got a call on Moday morning from the IR department saying that they had to use the last of her size tube in another child last week and the next shipment would be there on Tues (today) So much for my plans of convenience but what can you do?!

So today we headed off to Childrens after IR called to let us know the button was in. We got there and they went to release the water from thew balloon to take it out and the valve was broken!!!!! They tried everything they could think of including cutting the valve off to get that water out! No can do!!!! All the while Makenzie is screaming, frothing, kicking, tears everywhere, holing her breath, vomiting, and her face is splotchy she is so upset!

So we left the hospital with half of a button....lol.... and plane tickets to FL in 2days!!! AHHHHHHH So the new plan is......to bring her BACK tomorrow... yes for the 3rd day in a row.... remove and replace the button under general anesthesia!!!!! I am NOT happy!!!! I know he is right but I am still NOT happy!!!

I called her Rehab doctor to tell her what was going on! I needed to talk to some one that truly knows Makenzie! She is great! I know that the IR doctor know how to put in a mad button but he really doesn't know my daughter and it calmed a lot of my fears to hear her Rehab doctor tell me it was the best thing to do. She is also going to check into getting a MRI done tomorrow since we are going to put here under anyways. If it happens with less then 12 hours notice it is meant to be... if not then....

We also talked about the baclophen (muscle relaxer) that Makenzie is on at night and we mutually agreed that I would wean her off of it! YEAH!!! She is on such a low does that it should take less then a week to get her off of it completely!

On a much more positive note, Makenzie has learned how to throw a mean temper tantrum!!! She has decided that she doesn't want to go to bed at night! Crazy Girl! This makes me smile! Normal 3 year old stuff,,, yes for the first time in over 2 year I got to use the word normal! It is soooooo cute to watch her lip pucker up to start the 30 min long tantrum we have had for 3 days straight now! The second you give in she stops crying!!! It is great, but hard at the same time! I don't want to create a bedtime monster but she is getting cause and effect finally! She is communicating with me! Telling me NO... with out the words of course! How can I not show her that I understand? She does eventualy give in and go to bed... like by 7 instead of 6 so it is not like she is getting my goat until midnight!!! I love her so much!!

Please pray for us tomorrow! To say I am nervous would be an understatement! I am trying my hardest to put this in God's hands! He will protect her! Please pray!

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