Not So Very Merry!

Wow! Where to begin! Alot has changed since my last update!

Well on December 1, 2010 she went too see Dr. Perez since she seemed to be getting sicker! He had changed her meds up! He actually put her on three new ones! She is now taking Pulmozime, Hypertonic Saline && Cipro. She has been ill with pseudomonas since September 28, 2010 and is just now showing improvements with that. Since mid November she has been having alot of tummy/rib pains as I mentioned before. I had her in the ER and in the doctors office! All of her chest xrays looked well except for a little inflammation. So basically we had gotten no answers to why she was having pains!

Today December 15, 2010 she had an xray done that revealed she is really full of stool on both sides of her tummy. Her tummy is very swollen and hard. I could not get her jeans buttoned this afternoon. I called her GI doctor and had spoken back and forth with his nurse. When she was in his office on September 9, 2010, he wanted to decreased all of her laxatives since he did not like the amount she was on (6 pack of miralax, 2 doses of milk of magnesia, 2 doses of fletchers castoria && 2 fiberchoice), it was an excessive amount for a young child to be taken. We decided to wean her off of the fletchers castoria and MOM and see how well she does. He said to give it a few weeks. And if things didn't start improving he wanted to put her into the hospital and do another complete cleanout with another NG Tube! The last NG Tube she had done was just a few months ago and she was miserable! He wants to try her on a pill that isn't clinically proven for young children. It works a different part of the GI Tract! I haven't taught her how to swallow pills just yet. I am just not ready for that! She has been through so much this past year, learning to swallow pills can wait another year! Well that is all about to change because he is going to teach her in a few days once she is cleaned out. She was doing well at first but all of the sudden things started slowing down! I am nervous, scared and apprehensive about allowing her to try this new medication. (I will get the name when I call in the morning).

Throughout the day today she was barely eating but was drinking a good amount but she had alot of pain and gas. I needed to get things done and packed so I allowed her father (against the court order) to take her to Pizza Hut for dinner at 5pm. He texted me at 5 til' 6 saying they are on their way back because she had just thrown up all over the booth, herself, him and the whole way to the restroom. When she had gotten home I asked her how she felt and she had said not good. I then tried to give her fluids and she was able to drink them ok. She asked for pizza and I didnt want to give it to her but I cannot tell her no when it comes to food. She instantly started to gag. When this happens it is time to get her cleaned out because she is so full of stool that food has no other option but to come back up.

I gave her the nightly routine of meds && breathing treatments && I did manual CPT because I did not want to give her the vest and cause her more pain. She started taking chills but yet is feeling VERY warm. (another sign that things need out).

I had called the on-call GI && here I wait for a call back!

I am going to go for now && TRY (keyword try) to get some sleep! I will update tomorrow as I know more!

Much love to everyone && thanks for all the support && prayers!

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