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>

I cant even think of a title for this one...

We are still currently residing on the 9th floor of Dornbecher childrens hospital. Baybeblue has managed to get worse and worse each day that we have been here. She has the pnuemonia that has slowly been spreading and is now on both sides of her lungs. She has the Rhino virus which is just weakening her and also croup which is another lung issue. They also believe she has someother virus type things going on which is why they keep testing her blood over and over everyday. She has now even been re tested for the flu which we are still waiting on. She is now completely swollen from head to toe her little face is so swollen that her eyes are swollen shut. they are saying it is because of the fluids they are giving her and because her protien level in her body is too low so the fluid that her organs need is leaking out into her body space and not staying in the organs where it should be. The only way to fix this is to get protien into her but her feeds were dicontinued because of the g-tube problems. he G-tube is red and irritated but has also dialated itself so the contents of her stomach are just leaking right out everywhere. it even blew air out when I was cleaning it. they are now talking about giving her this fluid that goes Iv but has things that can go wrong with it so they dont like to do it unless necesary like this. If we dont get fluid into the organs that I dont know what will happen. She has also developed a rash that has taken over her face and is starting to cover her all over. They "think" that it is probably viral but it looks terrible and ontop of the swelling is very scary to watch her. They have started giving her new breathing treatments involving coming in and putting a machine around her whole upper body. the thing inflates and shakes her whole chest area really fast to loosen things then they suck her out like crazy. they also started doing albuteral inhaler treatments so I cant say for sure if it is really helping but they did get some junk out. When we first arrived to the hospital she was on 1 liter of oxygen to keep her stats up and over the course of the last week it has been bumped higher and higher and now she has been upgraded to a full face mask and her oxygen is now at 6 liters. In her whole life through all of her sicknesses she has never had to go over 1 liter, this is crazy. Her mouth is dried out and keeps bleeding from the oxygen and her poor little angelina jolea lips are al puffed out. We hav had non stop raging fevers and then we have had hypothermic points where her temp was too low and her blood pressure is now worrying them. her heart rate has been through th roof and her fingers and toes keep turning blue. I just want to pick her up and hold her but she is in so much pain that it just make it worse. She is whining and crying in pain when she wakes up so I have been making them give her pain meds here and there to keep her comfy through all this but she is so miserable. Im scared because I have never seen her this bad. I have never actually seen anyone this bad. I love her so much and My heart is just hurting so bad for her. Yesterday I lost it and had an a huge anxiety attack with chest pain and dizzyiness so I had to go downstairs and be seen. Basically they gave me some anxiety meds then I just wanted to get back to Baybe. Then is sat for the rest for the night with a migrain from crying. Today I am doing a little better but honestly not really. We have no idea whats gona happen and we have no idea how long we will be here. I have started a circle of prayer for her on facebook so if anyone is interested in adding me then just email me through here. Thank you all for your continued support love you all

OHSU our second home

Yes we are back up at Doernbecher. Soooo... Baybeblue went and had her H1N1 flu vaccination at OHSU on monday. They had no regular vaccinations, only ones for high risk kids so Baybe got one. I watched her closely for the first two days like they said and I saw an increase in seizure frequency as well as intensity. She started having the old kind of seizures she used to have in her videos. Then she started having them back to back and having trouble breathing in between. I took her to the hospital on thursday because she was statting below 85 on her oxygen all night and her heart rate was very high. She had a fever and was just not looking well. At the ER they did a chest xray and discovered she had some junk in her right lung so they diagnosed her with asperation pneumonia and sent us home with antibiotic augmentin. Over the next few days and ove the weekend Baybeblue got progressivly worse instead of better. By Sunday she was struggling to breath and her alarms were going off constantly. I called the on call docs at ohsu and told them what was happening and they said to bring her back in right away. So at 4 30 on Sunday afternoon I made arrangement for my sister to come get lala and get her to school in the morning and had to take Taylor to his dads so he could take care of getting him to school in the morning and finally headed to the hospital. We spent the whole evening sitting in a room listening to children screaming. One little boy was in the waiting room was in so much pain he was screaming nonstop and they just left him out there. The mom was crying and Im willing to bet the kids elbow was broken or disconnected. Im just gona say if that was my son, I would not have been so patient. He was in more pain than I have ever seen a child. Anyways they did another chest xray and it looked worse than thursday so they tried another antibiotic in I.V. form and since she was requiring oxygen to breath, they told us we would be being admitted. of course I hadnt eatin all day and I forgot my phone charger but this is the way the game is played. I brought a razor and deoderant so thats one positive. Oh yeah and my new amazing mini laptop that is saving my life right now, I love it!!! Of course we didnt start figuring stuff out until midnight when they realized there was no one in the hospital that could make her formula so I had to go to a secret formula mixing room and make her formula myself while this guy and a nurse stood over me. The nurse was funny, we both thought it was ridiculous that there was only one useable scale in the hospital and it was guarded. Apparently having to do with budget and feds watching over everything the hospital does, I dont know, sounded kookoo to me. So I got the formula made and we got meds figured out and Baybe was not ready to go to bed. She is used to being next to me so she whined until I got in the bed with her and held her then she passed out instantly and so did I, Sorry Joel :) He was waiting for me to get back on computer. I woke up at 4 am and the nurse was standing over me so I got into the chair and slept a few more hours. So now we wait again. They are now saying that she does have a pneumonia, does not have any flu, but the not being able to breath is stumping everyone. She is struggling so hard to breath that she sounds like an old grandpa when there sleeping. her little belly and throat are just heaving like crazy. They tried to take her off the oxygen this morning and she dropped immediately so she is back on as of now and we will not be going anywhere until she is atleast able to breath ok without the oxygen. We are waiting for nasal cultures and blood cultures to come back and hopefully she will start getting better with this third kind of antibiotics that they are trying now. Send your prayers and good vibes, we need em all :) Love you all and eat something yummy for me, haha. Il be on facebook all day since my phones dead, if anyone wants to find me LOL <3 <3 <3

Another Day Another Virus

Happy to say that it has been very boring and quite around here, just the way we like it. Baybeblue made a new friend in playgroup named Carter and he is sooo cute. He is also about the same age as Baybe and has the same diagnosis even has infantile spasms. Baybe FINALLY got her new chair YAYYY !!! she is now officially rolling in style. She got to show it off at playgroup, it was so much better for her than her evil stroller :) Halloween went well, Baybeblue was a puppy dog. Layla was a gothic witch and Taylor was a mummy guy. We decided this year to throw a halloween party for all the kids to make up for lala not having a birthday party this year. It was for the most part a great success. The only thing that went wrong was that our whole goal was to scare the crap out of the kids and we couldnt pull it off. Nothing we did scared them. We even had a pitch black candy hunt in the backyard and had neighbor guys jump out and the kids were so worried about getting the candy that they didnt even care. We did not get one scream. We had a dance off, and apple bobbing and we all boogied down and made complete fools out of ourselves. I gota give love to my girl Cholie for helping me pull it off she was right there with me and I couldnt have done it without her. Then halloween night Taylor went with his Dad and Lala felt too cool to trick or treat this year so I let her have a friend over and we went out to Dinner with the girls. We chose the perfect place because everyone there was dressed up in great costumes and all the customers were pouring in wearing costumes too. I dressed like a Doctor and it was a very fun dinner. It was much better than taking Baybe out into the cold weather to trick or treat and she did start to have some increased seizures that were a little more intence than normal even 2 that involved crying a little. Over then next few days she came down with a fever and was having very rapid breathing. On the pulse ox machine her oxygen was barely staying at 90 and her heart rate was 140-160 which is high for her. I chose to ride this one out and not take her in unless it got worse than this point. Her fever was at 101 which doesnt alarm me too much. Over the next few days she remained lethargic and was having pain around her G tube like she always does when she is sick. Then all the sudden today she wakes up and is totally better, full of energy, and movin all over the place.

Hmm lets see... Taylor got hit in the eye with a football and scratched his cornia and Lala missed school for a head and tummy ache but other than that they have been doing very well. Lala is excelling on her Dance team and Taylor will be startin gBasketball any day at my old highschool :) I am doing great in school and have hit the quite smoking for a month mark and am feeling amazing because of it. It is true that you have more energy and your skin improves. I also have a special glow right now because of some one in my life that i have needed for a long time. I dont know how he does it but everyday he seems to make me a little happier. The kids are actually seeing there Mom really happy for the first time. Makes me feel like I have been in super grumpy mode for a while. I always try to be positive for the most part but with everything that has happened I really thought that I would never meet anyone that made me happy again so it feels very nice, I like it.

Still no word on the move, even though we now have her chair they still dont know what is going to happen and there still is not a home open right now for us. Im just hoping that they are not going to move us right at christmas time because it is already going to be a tuff one as it is. I hope everyone is staying healthy, tis the season for viruses so wash your hands like crazy and stay home if you have a cough. People with CP are having an especially tuff time staying healthy I noticed, That makes me very nervous for Baybe.