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

I am back, since I am staying at the hospital I don't have much to do here. Adriana loves to just sleep, so what do I do. I spoke to the doctor she kind of just went over Adriana's test results. She has been pre evaluated for a transplant and so they had to run many exams on her. I was told they did not measure how much bowel she has but they are just going with what the surgeon said. Which is about 45cm of small. I know it is not much but we will see what we can do with it. Well Adriana is not yet receiving omegaven but the doctor told me that the NP that is in charge of that has been talking to CCS, and they might have an answer for us today. All I know is they need to hurry I thought she was going to get it along time ago but I guess it doesn't work that way here. The home health company has been coming by daily showing me how to do work the pumps, and do the tubing. It is fairly easy like everyone was telling me. Adriana will be discharged soon, we do not have a date yet because Ronald McDonald house is full and we are on the waiting list.They want me to go there for a few days so I have the feel of things and feel very comfortable that I can do everything myself. I realized today that it is alot I have to learn and do for her at home. Her broviac care,ostomy care,feeding pumps,NG care,TPN care and last but not least the regular baby care. It seems like alot but the only thing I would be doing daily is her TPN, lipids and feeds. When Adriana goes home we will work on trying to go up on her feeds slowly and we will also try to cycle her off TPN for a while to see if she tolerates it. We failed at it yesterday so I will also be taking home one of those machines that reads your blood sugars after you poke your finger. I would only use it in case of an emergency and I needed to check her sugars. I guess I will just accommodate everything to fit Adriana's needs at home. I thought being a mom was hard, but being a mom to a child with special needs is alot harder. I will keep you updated when I get a chance to sneak away from Adriana. I will also be adding pictures of Adriana when I get home. I am not able to add them here because the computer does not let me.

Adriana is doing well. We are still on the waiting list for a room at the RonaldMcdonald house, so we could be discharged from the hospital. We finally finished evaluatng Adriana for a transplant. I am not sure of any results yet but the doctor told me she would be by today to let me know what they are. They tried to cycle Adriana yesterday for 2 hours but of course her blood sugars went down. They were at 62 the first time and then went down to 39, the doctors werent so excited about that. They restarted her TPN right away and checked her sugard again. They then came up and she was fine, while her sugars were low she was not acting any different, she looked fine but they were worried she might go into shock, Well Adriana is not yet on omgaven we are stil waiting for an answer from the insurance but hopefully we get one today. So I am learning how to take care of her at home, the home health care comes almost every day to show me how to hook her up and how to use the pumps. They are not as hard as I thought. Well I will keep everyone updated as we get farther down the week. Hopefully next time I update you guys I will have the good news that Adriana has started omegaven let's just see.

Today we should be getting a response from the insurance regarding omegaven. Adriana also turns 7 months today. Well she went down at 10:00 am for a gastric emptying test. They will put a certain amount of food in her stomach and see how long it takes for the stomach to empty into the intestines and intestines into her bag. I was also told that they are getting ready to discharge Adriana from the hospital. She will be coming with me to the Ronald McDonald house which is about half a mile form the hospital. We will be staying there for a couple days so we can come to her appointements and check ups. It also gives me some time too make sure I feel confortable doing all of her care myself. I am very excited but scared at the same time. I don't want to mess up.. well after they feel I know what to do and she is doing good then we will be coming home. We live about 1 hr 20 minutes away from Stanford so if we were to have a problem it would be a long drive. I also have to get some last minute things for Adriana before she comes home. i am very excited but kinda scared like I said. I know I will do my best that I can and be carefull with everything I do. I will keep everyone informed with what is going on or what will happen with us. Adriana will go home on feeds, I am not sure how we will work with that or how we will go up on her feeds or anything.

I have been staying with Adriana is Stanford since Tuesday. I came home last night to take a little break but hopefully will be going back today or tomorrow to spend the week with her. She is doing very well, and it's just to see what the plans are for her. Right now Adriana is being evaluated for a transplant, which does not mean she needs it right now it's a just in case thing. The transplant doctor feels it is a good idea to evaluate her right now that she is doing good, just in case down the road she gets sick and she needs a transplant. All they would do is add her to the list because all of the test have been done. I had to make it clear to all of the doctors and team that came in with me that we are not there for transplant. We are there to get omegaven for her and see what happens. Adriana has had some lab work done on her blood, and has her stool checked daily. In the stool they are checking to see if she is absorbing all of her calories from her milk or just dumping it. The good news is that she is absorbing all of her calories from her milk. She is only getting 2cc's ever hour continuously right now but is doing very well with it. She is only been putting about 74cc's from her ostomy daily. The GI doctors feel she is doing fairly well with the intestines she has left. They have given me high hopes that we would be able to rehabilitate her gut with time. They know how much she has and they are not exactly sure how well it works but hope that with time and feeds it will grown and adapt. Right now she has had the barium study done and we found out she has all of her rectum. Which means she has the muscles in the rectum that would allow her to hold it it when she had to use the bathroom. That will help her in many ways if she were ever to get reconnected. One day I hope she will but right now that is the least of our worries. The plan for right now so far is to run her lipids for 12 hours and continue her feeds at 2cc's an hour continuously. They will continue to take daily ostomy output, and do blood work daily, hopefully on Tuesday the 6th we will have an answer from CCS. We are waiting for them to give us a yes on omegaven and she will get started. They will continue to check her feeds and either make them go up or down depending on how well she does with it. She was at 3cc's yesterday but they told me today that I guess they found too much sugar and fat in her output meaning she was not really absorbing it all at 3'ccs. So they brought her back down to 2 which is ok. Adriana continues to be a sweet loving baby that enjoys spending the day with her mom and watching tv. I like to lay her with me on the little cot that I sleep on which is right next to her big crib. She will take naps with me and loves it as much as I do. Hopefully we will be out of the hospital soon, the sooner we get omegaven the faster we will be home.