Yee ha, what a ride!!

So things were continuing to get a little worse every morning they would do a new xray on her and it would be spreading a little more and they tried switching her anitibiotics a total of 7 times i believe. Baybeblues whole body is now completely swollen up, her belly button is about to pop out like a pregnant women and she developed a rash that is bright red and covering her whole body. I was really concerned about her IV site and after telling 3 different docs that her hand and arm were way more swollen than the rest of her body and that I wanted them to replace the IV since it had been there for a week already anyway. They called the IV team and sure enough the IV was no good and they decided they would have to put in an IV line that would be threaded all the way in to right by her heart and this IV they would be able to draw blood from. SInce they were doing multiple blood draws a day this sounded like a good plan so they had to sedate her and take her for the procedure. It went well event though they put it in too far and had to pull it out a little afterwords, now it there and it can stay for a long time. Then I woke up the whole side of my face was swollen and I had a bump on my head and neck that felt like i had been punched a bunch of times. i went and got checked out and turns out I have chicken pox. Of course I caught it somewhere here but they had ot stick me on a bunch of meds and me n Baybe got moved to the negative airflow super isolation suite. It is the biggest room they have and has a giant bathroom with a giant shower :). We got all settled into the new room and her blood pressure started dropping and they couldnt fix it so they told me they were going to have to start a blood transfusion. They explained to me that we would have to use donated blood since I was not a candidate since im sick and it takes a week to clear the blood anyway and she needed some now. I signed the paper and they started the blood drip. Then i started haveing a reaction to the antivirals so they sent me downstairs to get benedryl and as soon as i got down there they called me and said Baybeblue would have to be rushed to the ICU because her blood pressure and now she was hypothermic and they couldnt get her temp back up. I ran back up there and we moved again to the PICU pediatric Intensive Care Unit. this room sucks. They put her in this inflatable blanket that was blowing hot air on her to heat her body up and they had to poke her all over to find a new IV spot since the blood was flowing in the other one and could not be stopped. Finally she calmed down and I asked if I would be able to make a bed near her and they said absolutely not. In the ICU they dont allow anything near the bed incase of emergency. I actually had to sleep on a bed across the room, behind a beam where I couldnt even see her. I did pass out pretty hard for a few hours since they had given me morphine in the ER then the benedryl, I dont even know how I was functioning that long. soooo... I woke up delerious and confused cause it was so quite and went to check her out and the nurse said her temp went normal, her blood pressure it not perfect but better, and she is almost off oxygen. I was like WHAT? She was on high oxygen the whole time we have been here and all the sudden she is just breathing wonderfully. She is still breathing fst but moving oxygen and I was so happy she was only on 1 liter and at 100% so they bumped her down to a half. So they said they would watch her for another 24 hours but if all goes well we would be moving back upstairs the next day. The night went pretty well, they had to mess with her a bit, not sure why, just always something and she was whining alot so they gave her pain meds and she had to have a little bit of oxygen but she is still only on one liter. Bad news is she is still swollen really bad and her lungs now not only have junk in them but now have a bunch of fluid in them. Apparently her organs arent holding fluids in them like there suposed to so the fluid is leaking into her body and lungs. They started giving her meds that is suposed to reduce the fluid in the body but it doesnt seem to be working. We had a pretty quite night until they mad me get up at 5 am again and leave the room so they could do an xray. then i passed back out and woke up to her crying, I jumped up and saw 2 nurses on her and was like ehat the hell are you doing to her. They were putting in a NG tube down her nose and she was starting to scream. No one even told me this was gona happen. They said that her G tube in her belly is shot so the surgery team would be coming to look at it but they were concerned she was asperating more fluid into her lings so they needed to put a tube strait to her intestines so they could start feeding her again without it leaking out her belly through the tube hole or going back up and into the lungs. I was a little thrown off and told them I wanted to do it myself. They told me i couldnt for liability reasons and I was like that doesnt make sense you guys are the ones that should be worried about doing something wrong to her not me. I have placed the NG tube many times and I feel like she was in less pain when I did it. So whatever!! They had to take an xray after they placed it and sure enough the tube coiled up and was heading back up instead of going down. They had to take it all the way out and replace it again which is just so miserable for her so I got them to give her some more pain meds and they did it again. Now we are waiting to be moved back upstairs and waiting and waiting. Meanwhile what a wonderful thing to be happening at the same time as all this is the wonderful people that have surrounded Baybeblue and I with love. They dont realize how much they mean to me because they dont understand how many times I have dont this all alone. Granted it has never been this bad before but I am just so overwhelmed. I am on Facebook doing updates for my family and friends and everyday getting messages from someone new that just touches my heart. Everytime I start to get down and really loose it, someone says something that just pulls me back up. I wish I could show each person how much they have helped me but I dont even have the power. My sisters boyfriend Steve has a brother and his brothers wife is named Donna. She is OMG so amazing. She came to us with her lady group to pray for Baybe and has just already done so much for me im almost in shock about it. I have never had a friend that was like her before. SHe is so selfless and just true, and just beautiful inside and out. I am so lucky to have her in my life now, she is like a gift really. Along with her comes her amazing friends that have come up here and sat with Baybe and massaged her all over and loved her and prayed for her and they brought me tons of stuff and they threatened me with physical violence to make me drink water and eat LOL. That was hOt!! They all for sure make me want to be a better person everytime I talk to them. SO then there is all the friends from highschool that I never thought I would see again and now they are a part of my life, i feel so full of love right now, you guys are all making me so strong its amazing. More updates later and sorry if this is sloppy but Im too tired to proof read and its just too long of a post so Im gona go try and hurry things along so I can get her upstairs, Im tearin up a little im so excited to shower. Love you all and thank you for your prayers. I believe in the power of people and prayer and it is really working. Everyone have a wonderfull thanksgiving and keep us in your thoughts, give thanx to God that he is holding my Baybeblues hand right now and healing her from whatever this is. Thank him for listening to all of our prayers and ask him to keep her heading in the right direction, getting better everyday. <3>