So Adriana was admitted into Children's Hospital last night. Since last week on Friday I realized that she had this really ugly cough, it got worse over the weekend and the wheezing and rapid breathing also started. I took her to a Doct appo on Tuesday and they decided they would like to take an x-ray of her chest, so they did. I got a call later that day from the Dr's office, they told me that the tech that read the x-rays said that she was having heart failure, so the Dr though that she might just have sever bronchitis. We came to Children's later that day and they put her on some oxygen to help her not work as hard. They gave her a lot of breathing treatments which also helped her alot even though she really hated them. They also decided that they would need to put an IV in her, which I argued about. They don't need one, she has a central line and that is enough for her. They were not going to give her antibiotics anyways so why an IV, I told them that they had one shot to get it i, if not then that's it. So they did try once and they were able to get it in, they drew some blood and ran some test. All of her numbers came back just fine, nothing out of the ordinary which was very good. They said Adriana has bronchitis, they they felt like they should monitor her over night and see what happens. She did very well over night and did not need any oxygen. She has been doing fine since, I set up her tpn/omegaven last night and I will do it tonight as well. I would rather not have so many people mess with her line, I can do it all for her, well i have been doing it. The Dr told me she would have to stay one more night and if all goes well she will be discharged tomm. I hope she will because staying here is so boring and she is in isolation just in case. The Dr also told me that the pharmacy would have to inspect her omegaven to make sure it is appropriate for her to use. I told them it didn't matter what they though, that it was her lipid and it was prescribed to her from her GI doctor so if they had a problem with that to give her GI doctor a call. So they decided that she could use her omegaven here in the hospital. Well I will keep everyone updated I am going to go back upstairs with her since I left her alone and if she wakes up she will cry because she does not know where she is at. Also when you leave your baby alone in the room someone always comes in and decides they need to draw some of her blood. Why? I don't know they don't even need it. She has bronchitis not something alse.

I got a call and I was told that Adrianas blood cultures have shown no growth in 2 days , so far so good. On the other hand I am sure Adriana has a cold, I have a cold her dad just got over one and she has this very nasty cough. Other than that she has been doing very good. She turned 8 months yesterday and on the 9th it will be one month on omegaven. Like I had said her bili is coming down. She had an appo with the thyroid doct yesterday and I was told Adriana might not even have hypothyroidism. The problem is since she was premature so was her thyroid gland, by now it should be mature but since she is taking medication there is no way to tell. They don't want to stop her medicince because it's too risky, If she were to really have it and they stop her medicine it will affect her brain developement. So she will have to wait untill she is 3 years old to know for sure and check it. Takeing the medicine will not do her any harm if she doesnt need it though. We are also not sure why her sugars drop very fast and she is not able to be cycled of her tpn. They thought it was her liver but other children with sicker livers do fine with cycling and not her. There might just be something else to Adriana but we are just not sure yet. It will take some time to find out exactly what is causing this. The doct ordered some labs and we will see what happens from there. Adriana loves to watch tv, she likes Tom and Jerry and also sponge bob squarepants. She also enjoys playing with the toys her dad has bought her but most of all she enjoys nap time.

Adriana has had a very busy week, this whole week she has had app the only day she had off was Monday. Yesterday we went for her clinic at Palo Alto and saw her GI, things are going good with her but she was running a low temp fever Monday so we decided to draw some blood cultures. They also did lab work, so her platelets are back up and her bili is coming down which is very good the direct is 7 soemthing and total is 9 something. The blood cultures have not grown anything, I am pretty sure that she is just trying to fight a cold. Her dad had a cold last week which is is just getting over and I am starting. So she might just be starting to get a cold as well, hopefully no infection. Her GI doctor decided she does not need the NG tube anymore and just to keep giving her the bottle so she can learn and finally take it. She is doing well she will actually open her mouth and accept the nipple of the bottle, but of course will not suck on it. So I just put the nipple in her mouth and let it drip a little milk and then she swallows it. I on't think it is measurable yet, what she drinks but soon with time it will be. She is doing good and I am too, I think I am pretty use to doing her care and feel very confortable with it now. I got into a routine now so things are going good. They also decided to go up on her omegaven, she will now be getting 6.5 of the bottle. As she grows she will get more eventually. Adriana weighs 14.10 pounds right now and her last GI app she was 6.2 kilos and now 6.6 kilos. They did cut down her calories and she is doing better.

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.