HAPPY HALLOWEEN from Adriana and Family. She decided she wanted to be a monkey this year, what a good choice, don't you think?

Adriana has been doing good since she has come home. Only one problem she decided she did not want her NG tube any more and pulled it out. We had to take her to the emergency room to get it placed in again and the next day it was out again. She really does not want it, I wouldn't blame her, plus it makes her sneeze alot and her nose itchy. I let her GI doctors know and we will see how we can get it back in without having to go to the emergency room, there are too many sick children. I have been offering her milk by bottle but she will not suck on the nipple, she will play with it for a little while and drink the few drops I can get inside her mouth but that's all. Of course the milk is just for rehabilitation her main calories come from tpn/omegaven. She is doing good on omegaven, I can actually see her color setting in, her eyes are less yellow and she looks much better. She almost has 1 month on omegaven already and her labs have been good. The doctor is happy with it, I am getting use to hanging a new bag daily and can do it without thinking about it. Of course the hard part is connecting it to her because she does not like to stay still she will wiggle like a worm. Thank good she has not had any fevers or anyhting, she will get fussy sometimes but it is easily fixed with picking her up or rocking her to sleep. Knock on wood that she does not get an infection that is th elast thing she really needs. I will be adding some more pictures of her and we have a GI clinic appo on tuesday, her last one was about 2 weeks ago. The doctor said it was fine she was doing good no reason to see her weekly. We have not taken Adriana out so much for the flu season but when we have gone out I also get those stares like what is wrong with your child. They tend to ask because they see her NG tube and ask why? It's a long story I tell them but she just doesnt know how to eat yet, she's learning that's what I tell them. Then they saw ahh like if it was that bad, they don't know the whole story because that is much worse.

Adriana is enjoying being home with us. She is a lot to handle at night since she decides she does not want to sleep untill late. She takes a lot of naps through out the day and at night I have to fight to get her to sleep. She is the last one to go to bed and the last to wake up the next day. She loves watching cartoons and playing with her dad. I enjoy playing dress up with her and she hates it. If it were for her she would be naked all day but I can't let that happen. So our new shipment day is friday, they decided to switch it since clinic is on wend and the shipment day use to be wend. The doctors want to see her and if they make any changes they want to be sure that she gets a new shipment. So friday it is, we have a Pediatricion appt tomm, it is very hard to find one for her since alot of them just don't want to deal with children like her. So why are they doctors? well anyways I will be adding a couple pictures of her.

Wow, It has been so long since I have updated Adriana's blog. Well here I am Adriana has been home for 1 week now but has been under my care for 2 weeks now. She is doing good and I am getting the hang of doing all of her care. It is alot to remember and do but I seem to be doing good. She has been fine lately just loves to be held, watch T.V and loves the attention. Adriana is on HA for 24 hours and I run her omegaven for 12 hours. She has had 2 clinic appo and they drew blood as well. Her bili started to rise and now is coming down and all of her numbers look good. The doctor was satisfied with all of them no worries for now. She enjoys being home but she is not easy to put to sleep at night. I hook her new bag up at around 9:30 and her omegaven as week. We then take everything to the room to go to bed and she just starts talking and talking. She obviously does not want to go to sleep. I get her to sleep and lay her down and 20 minutes later she starts to cry. I get up and try to get her to sleep and she is talking again, of course in the dark until she finally falls asleep. I wake up about every 4 hours to change her diaper and empty her ostomy because if I don't she will get her blanket wet. She has an appo with her padiatricion on Monday, and next week on Mon with her surgeon. Next Tue she has clinic which is more blood draw. I did have a problem with the line change on Monday when I had to change her blue max plus cap. It seemed that the blood was flowing back from her broviac into her line and I had started her infusion with her TPN and there was an air bubble. I don't know how that got there because I had primed the tubing and there was not air at all. I now hook her up every night with her new bag running so it will push against the blood when I connect her. I just get a little jumpy because Adriana cannot go without her HA for a few minutes due to her sugars dropping. We will also be seeing her thyroid doctor and they will be running some test to see why her sugars drop so fast, we will go to day hospital or something, we wont get admitted but we will spend all day there. I am getting use to doing all of her line changes daily, it's just another routine I added to my life.

I cam home for the weekend, as you know Adriana will be discharged Monday. That is the plan I think I am doing very will with all of my learning to take care of her. I get the hang of all the regular baby stuff and I think I have almost conquered doing the pumps and tubing as well. So here is the scoop Adriana does not tolerate being off her HA so I will be taking home an extra pump for that reason. The home pharmacy will give me 2 TPN pumps and 1 lipid as well as 1 feeding pump. That's a lot of things, plus all the supplies and ostomy supplies too, oh and broviac. Wow, so that is the reason I decided to come home for the weekend. To get everything together since Adriana's room is a mess and need to get things organized. I also have to buy her stroller, some diapers, baby wipes, one of those white plastic dressers well 2, 1 for supplies and other for her clothes. I also need to get a diaper bag for me to carry with me which I do not have yet and some other little things. Her Dad and I are both so excited that she finally will be coming home. Adriana is now getting omegaven and her second bag was hung last night. Things should get better for her now, even though I know the first few weeks her bili will go up and then come down and her color will come back. I can't wait to see that happen. Well we do have to stay locally for a few days just in case anything were to happen, and I think until our appointment which they will tell me all of this on Monday. I am so excited we will finally have our little girl home after spending 7 months in the hospital. She has never come home since and this will be the first time. I might now even know what to do, I will be so excited with her home. I know flu season is here so we might not be taking her so much right now. The only medication we will be taking her home with is her thyroid medicine which she gets orally. Then tpn/omegaven and her NG tube for her feedings. She is taking pregestimil since my breast milk ran out but right now they decided to stop her feeds because she started to dump. They will most likely start them back up for Monday. She is getting very little but every little milk counts. So like I promised the pictures This is Adriana's new crib in StanfordAdriana after her long trip from Children's in Oakland to Stanford. Adriana's 2nd day at Stanford playing with her favorite toyYes that's Adriana with her summer bow the flower is bigger than her headAdriana after her bath, she like her pink lady bug robe

Good news everyone, Adriana was approved by the insurance to start omegaven yesterday. She received her first dose yesterday night and they ran it at a rate of 1.2. They said that's there protocol, so far so good she has not had any reactions to it. I will post pictures tomorrow