Journal

I have not written in a while, and there is so much to say. 2 weeks ago, Sarahs o2 stats were dropping to the 40's and 50's when she got off of the couch to go to the bathroom (and thats with 5 liters of concentrated oxygen  going through a nasal canual (<<<spelling). we live an hour away from our liver specialist, so we called and let them know what was going on. and they told us, this would be as a result of her hepatopulminary syndrome. You know, in this waiting game, it's just apart of the draw. so not lsat wednesday, but the week before that she was driven to thechildrens memorial hospital in chicago illinois by ambulance. she has been staying here in the ICU, they have had her on 10 liters of oxygen, and when she gets off the bed, and goes to the bathroom on the stool, right next to her, they raise her oxygen to 15L. her o2 stats still drop to the 60's and even as low as the 50's. so we were trying to figure out the best way to get back home, and how we could keep her oxygen up and what not.

so we  met with her team of specialists, last wednesy day on the 11th, and I took some notes, and this is what we found

-In the past 4 weeks sarah lost 25lbs

-The biggest concern, was sending her home, when she had been on such high concentration of oxygen and her stats dropped so low [we only have a concentrator that goes up to 10L at home]

-The hospital takes measures that could be life or death, if her lungs fail and her o2 stats drop too low, her heart will beat abnormally, and there will be no chance of transplant

-Her blood gas was in the 50s

-Portal hypertention has been the main cause of death seen in children with hepatopulminary syndrome who do not get a liver

-Every 3 months, our team [the pulminologist, the liver specialist, and the cardiologist] meet up, and they make up their report for why sarah should be raised 3 points

-3 points is uaually the most, but they have exceptions, this past time (2 weeks ago) we asked for, or i should say they asked for 5 points and brought up all of her exceptions

 as for the weight, fortunately since sarah has been diagnosed wsith hypothelamicobesity (please forgive my spelling) so fortunately she can afford to shed some pounds.

so that is all that i wrote down, but i also recall that we asked lets say we asked for 5 points the next time, they said they didnt know if we could get the points since we JUST asked for the 5. and that sometimes the scoring doesn't always justify they severity of the sittuation, and they will do all they can, and blah blah blah. and the unfortunate situation, is that there are not enough livers to go around.

the doctors have now told us, that home care is not an option here. the highest concentrator that we can get, only goes up to 10. and since at home sarah would have to go all the way to the bathroom walking, that would make her stats drop way way more. so

since we have established a relationshios with the doctors here, and we like the  facility better here than in rockford, then we will be staying here (for now).

her MELD score is now 30.

the devistating part, is that poor sarah is 13 years old, her life has been put on hold, and se has to be here in this prison. i mean, im so back and forth with it. im just mad. mad that she can not be a normal kid, she cant be at home with us, she cant be with her friends, i hate all of that. And i hate that when i stay at the hospital with her, she asks me "when will i be able to come home" and i really don't want to say... so i just said "sarah, the doctorsd are doing all that they can, and they just want you to be well. do you think they are doing wehats best?" and she said, i know they are. and then she just kind of dropped it, i think she knows whats going on for the most part, but we dont really pry her in talking about it. she keeps us all grounded and as saine as we can be, so i thank goodness she is so light hearted and innocent. anything else, would kill us all.

god... grant me the serenity.

and hopefully lots of prayers and wishes will get us through

 look at my beautiful 13 year old sister :]

we got all dressed up, and i took her to her school dance. we had a lot of fun.

i've had an awful time as of late, because i have not been sleeping, as i should. so before yesterday, i was having a rough week. i couldn't concentrate at school, work was nearly impossible without crying. i got through it though.

Sarah is going for her 6month evaluation on Tue (as am I going with her), and my whole family is a little nervous. We have been noting the small differences, which have been a little overwhelming to deal with. It is hard for her to walk anymore than 5 ft without her oxygen dropping. The doctors want to pull her out of school, because they do not want her getting sick. and everytime she says "i just want to be like everyone else" it absolutely kills me.

but i do have to say, that i am trying to so hard, and pervailing, i think, to keep in a good state of mind. i know, that doctors said she would not make it past 5, and just look at her now. i have to have faith, that we would not come this far, just to stop now. i know that everything happens for a reason, and i just keep telling myself, that i have to have faith in the plans God has in store.

It's no secret that i have a problem trying to sleep, it has been that way for 5 years now, and i can't remember a day when i had "normal" sleeping patterns, or could sleep sound through the night without the aid of a medicine. 

well, last night i fell asleep, probably sometime around 3 30am. (remember that i have to work today from 9am-3pm, so i was trying to get just a small amount of sleep). well, i was thinking about my little sister a lot. probably because the other day i saw the movie "my sisters keeper". oh man, that was nearly the most sad movie, i have ever ever seen. i cried, from start to end. i am thinking i cried a lot, because i thought of the fears that i have with my little sister a lot during that movie. anyhow, last night i had a dream that i was driving down a country road, and i had my neice, and my little sister in the car with me. well, a truck came through an intersection, and smashed the car. my little sister is currently on 4liters of concentrated oxygen right now, because she has some shunting going on in her lungs, and she can't walk anymore than 20 feet, if that, without needing her oxygen. well, anyhow, in my dream, i think she got killed. i was just screaming "SOMEONE GET HER HER TUBES" and for some reason that was the very most important thing in my mind at that point. and i just felt like NOONE would hear me out, and no one was doing anything to help. Anyways, needless to say, i woke up, balling my eyes out. and then, of course i could not sleep. i slept 10 min here, 15 min there, but i just kept having fucked up dreams, so i guess my body told me to stay away so i didn't have to deal with that shit. man, i really don't know. 

also, my brother had 17 months clean. he came to me 17 mon ago, and he had crashed his car, he didnt remember where or how he did it, he was using cocaine, taking pills, and ofcourse "just pot". but he decided 17 mon ago that he could not live the way he was, anymore. and i mean, before that, we had never really been close. the way he lived scared me, and i distanced myself. well, he currently relapsed, and got kicked out of our home. he just got a settlement for 3500 dollars, and i am really worried about him. i had some dreams about him last night too. my sister found some small blue pills in his room, i looked up pictures of xanax, and she looked and said that they were more round than the xanax looked, and they were really small. well, idk, im not sure what they were. it just really really sucks. MY BROTHER, my  brother, he's gone, while he's using, he is not the best friend, that i have gotten so close to this past 17 mon. it kills me.

i guess, thats life though. i am going to get to work.