So Adriana finally made it Stanford yesterday, they were there to pick her up around 2:45 or so and made it here at about 3 or so. She was no admitted into the nursery she got her own room. As of right now she does not have a roommate but hey someone can always come at any time. She has this big bed, which they like to call a crib although it is nothing like her old baby crib she had at the other hospital. So anyways she likes it here because she also has a t.v to watch which she has never seen one in her whole six months of life. I was also able to walk her around the hospital halls, which she enjoyed and of course was really tired and fell asleep. They did lab work today the normal blood work they usually always did once a week. So Adriana might be getting started on omegaven tonight, I hope so. The transplant team will also come by and talk to me regarding what there plan is. As of right now I am not thinking about transplant of course, I mean who really would. Well I have pictures of her but This computer does not have any connections so when this trip is over I will be able to put them up. I might be staying here in her room, there is a day bed for me to sleep on or If I'm lucky I will be getting a room at the Ronald McDonald house, I am not sure as of right now. We will see later on in the day. I think Adriana really enjoyes being here everything is much different than at the other hospital. She has more privileges here than the other place which I really like. I know they do there things differently but I will just let them know the way I like things done. I will continue to update everyone as we continue on this journey.

So Tomm is the big day. We will be going to Stanford and get omegaven for Adriana. She is doing good for someone who just got over a line infection. I packed all of her things and took them home from the hospital. It came out to 6 bags of all of her things. I had to pack a bag for her that I can take to Stanford. It includes some clothes, socks,head bands, and a nail clipper. Everything is ready for her ot go tomm, they put all of her papers for her transfer in a big yellow envelope. She looked so cute today in her purple dress. She was awake when we got there and finally fell asleep on me. She would stretch and move, and wiggle but not wake up. It looked as though she was having a bad dream or something. She was very confortable but makeing me very hot, she was laying on me and breathing down my neck. Adrianas ostomy output has come back down to her normal numbers, and she is still on her feeds. She get's 2ml every hour for 6 hours 3 times a day, so once a shift. Watch out Stanford Adriana will be there tomm. Adriana and my mom

As you may know I have been waiting for the call telling me whether or not it's a go on Monday. If Adriana will be transferred to Stanford and receive omegaven or if she will just not go at all. Well that call just came in not to long ago and WE ARE GOING ON VACATION. Yes you read it right Adriana is going to Stanford MOnday and will be getting omegaven. I am so excited I am about to pack my things because I too will be staying out there with Adriana. I will be staying at the Ronald McDonald house across the street from the hospital. She is suppose to only be there for a week but let's see what happens. I have to make sure to bring enought clothes for her because of course a baby get's dirty easily, and especially when you have an ostomy bag. Whoo ho, I am so excited I will be away from home for about a week but it is so worth it. Her dad will not be staying with us because he has to work but he will go with us on Monday ot get to know the hospital and doctors and just to find out how to get there.

Wow so we finally come down to the end of this long week. Adriana is acting herself and of course feeling much better. So her cultures came back negative for the infection which is the good thing. That means they have cleared it from her blood but she still needs to finish up her antibiotics. Her infection this time was gram rod + and gram rod -. Last time she has MRSS which is a staph infection. So I did Adrianas line change yesterday which I think I did pretty good, I am getting the hang of it. I am more worried about being as sterile as possibe and clean as possible. It helps when I have someone there playing with Adriana while I do the line change. It's also easy to do her broviac change when someone is holding up her little arm and playing with her. That is the only way we can get her to stay still. So far the best person on doing all of that is her dad. She adores to play with him and he is the only one that can get her giggling and laughing. The nurses too but she kinda just stares at them all wierd. Anyways her feeds were restared and she is getting 2ml for 4 hours every shift. So 3 times a day only for now. Monday is the big trip to Stanford I hope we get to go. I recieved a call yesterday afternoon from the nurse coordinating the whole trip. She told me that she had talked to the GI team in Stanford and told them all about her infection and how it was cleared she just needs to continue her antiniotics and she should be good. Well Stanford said they will have a YES or a NO answer for us today. I really hope she get's to go, we have always been so close and been held up for some reason or another. The nurse told me that Adrianas liver test have improved a little which i am really sure it has been because her feeds. The reason is she has been on feeds for about a month and so that must of really helped her. That doesn't mean she won't benefit from omegaven. Cross your fingers hopefully I get the call with good news today.

Adriana has been through a lot this week. She came down with a fever on Sunday or Monday so they took some blood cultures and urine from her. The urine came back negative and blood cultures came back positive for bacteria. They then took another culture to see what kind of bacteria it is exactly to know what kind of antibiotics to treat it with. Right now she is being treated with antibiotics, the doctors think the infection came from her GI tract and not the line but they are not 100% sure. So she hasn't been feeling great with this infection and fevers, they are giving her ibuprofen orally which is helping her fever. She was also acting very fussy the other day and they thought her neck was stiff. They decided they wanted to do a spinal tap on her, you heard right a spinal tap. They tried that yesterday and were not able to get any spinal liquid, the only thing they got was blood, and her platelets were low so they needed to infuse her. They then did an x-ray of her left thigh where her broviac line up to be to see if they could find any bacteria in her bone and they found nothing. They also tried to put PICC line in her head but were not able to because of her little veins being all beat up. Yesterday they did another spinal tap and were able to get some spinal fluid. They told me they only saw 3 white blood cells in the sample and that was good. They did not see any bacteria in there under the microscope, and they felt very sure she did not have meningitis. Which was a big relieve for us, so she is septic but it did not get to her brain or anything. So they also made her NPO because she had a big residual in her stomach the other day but just started her feeds again today. The nurse told me she looks much better and seems like she is getting better. I believe they also told me that they drew another blood culture and the results were negative so far, they are not sure if the infection is gone yet but she is still being treated with antibiotics. Monday is her big day Adriana will be transferred to Stanford and receive omegaven. So Adriana is getting better right now and just fighting off her infection.Adriana is our little fighter and has proved it to us.

Adriana has come down with a line infection again.This really sucks she just got over a infection and had her line removed and a new on placed. Well last night when I went to visit Adriana she was acting herself but the nurse told me she had spiked a fever, they gave her ibuprofen orally and her temp came down. Her Dad and I gave her a bath and she loved the water but as soon as I took her out of the water she started to fuss. I knew she was cold and tired. I dressed her up and as soon as she was all dressed I picked her up and she fell asleep in my arms. She did feel a little warm, but her feet were cold. So they took some blood cultures from her yesterday and they also took some urine to check. Well I was told today that bacteria did grow on the blood cultures. I am not sure how many but they kinda gave me a list, I think it was like 3. I am not understanding why all the sudden she is getting these line infections. This is the 2ND time and she had never had any before, but I did realize that when some nurses do the line changes they are not as sterile as they should really be. That really bugs me, I was taught to do it one way sterile and they totally do somethings wrong, which they could contaminate the whole line. I hope this line infection does not stop her from going to Palo Alto this coming week. She is scheduled to go on Monday but is on antibiotics and last time they didn't want her to go while she was being treated with antibiotics. Ugh this is getting very hard for me and very frustrating. I just hope they get rid of the line infection and she gets omegaven on Monday. That is her set date the 28Th, the doctor will be back into the country on the 26Th and he will be ready to treat her. Adriana is still on her feeds, she is at 2ml every 6 hours and stops for 2 and back on for 6. So she gets 12ml every 6 hours and takes time to digest her food for 2 hours. She has been having residuals but is processing the food, so it's not like nothing is being precessed. She just takes longer to process it due to the stomach being squished. We will have a new doctor on service today, I just hope they don't take her feeds away. Every time a new doctor comes on board the plans change, I know she has short gut but she is tolerating her feeds even with residuals, she has been on feeds for about 2 weeks or so maybe even almost 3. I am not exactly sure what date she started but is doing well with them. Many doctors come on board and think just because she only has 45cm of small intestines that she just cannot eat, you never know what she can really do until you try, Right? Well look at her now she is not dumping her food, I know it is very little but hey before she was getting less milk and her ostomy output went way up. Now she is getting 18ml over 24 hours and has a lower ostomy output, her normal right now with feed is any where from 93-120 but last night she had 130 out, I am not sure if maybe it's because she has a infection or something. Well hopefully Adriana will get over her line infection and be on her way to Stanford on Monday. Here is a picture of Adriana yesterday, she is wearing her flower headband which looks really cute, I know it's big but the nurses couldn't help but put it on her and take her picture for me. I made her this headband and some others.

Adriana has been doing well she continues to get her thyroid medicine orally and is taking it. Although she makes faces and just want's to spit it out we manage to get her to swallow it. I have not yet tasted her medicine to see if it is bitter or if it just her. When I was giving her a bottle with breastmilk she did the same, she acted as if it had a very bad taste and would try to spit it out. Adriana's ostomy output continues to come down, they also changed her feeds. She was getting 2ml every hour all day but she had too much residuals so the doctor changed her to 2ml for 6 hours and a 2 hour brake and back on feeds for 6 hours. She seems to be doing better with this but she still has residuals like 5 or 8. The rule still applies, if it is less than 10 just re feed it to her and start her feeds. If it is more than 10 most likely they toss the residual and start her fresh on her new feeds. I hope that as soon as she get's on omegaven she will be able to tolerate her food better. This will help with the liver function and spleen so it would be easier for her stomach to digest and brake down the food much faster than now. Right now she can not be on feeds every hour because she needs some time to pass her food down. Adriana will be takeing her trick to Palo Alto on the 28th, the day she will be started on omegaven. Soon I know we have been counting down the days. Adrianas ostomy output has varied but it came down to the lowest she has ever had it which is 93 in 24 hours and that is with feeds. I don't remember what was her lowest without feed but I know it might have been around 150. I hope her body is doing what it should be doing and like I said hopeully omegaven plays a big role in her feeds. I am not sure if we will have to put Adriana through another surgery, most likely we will but I don't think it will be any time soon, at least I hope not. So keep your fingers crossed that she continues to do well.

So yesterday we got the BIG news. As you all know Adriana has been taking her thyroid medication orally to make it easier for when she comes home. It would help so I owuldn't have to brake into her med line at all and it would make it better for preventing infections. Well I was told they would give it to her orally and after a week of that check her levels. Yesterday her levels were checked and they came back NORMAL. I was so excited when I heard that, especially knowing she is taking it orally and it's working. I never thought Adriana would be able to take her medicine orally, well the absorbing part. Things are turning around for Adriana and getting much better. She will continue to take her medicine orally and we will continue to check her thyroid levels to make sure things are normal. She continues her feeding but now is at 2ml everyhouur all day. She constantly is getting 2ml everyhour and never stops. I hope she does well with this, the doctor told me to knock on wood, we are trying to see what she can tolerate. She has never done this well with food since after she got part of her bowel removed. So if she is absorbing her medicine she must be absorning her milk too. I just know it, I mean her ostomy output use to be high without food it owuld range 150-170 and now with food it has come down to 110-120. It has been like that since her feeds started. As you may all know she continues to have residuals, if they are greater than 10 the doctor decides what to do with it. It works best with her to just dump it and start fresh, because if you just keep adding to her residuals it slows down her digestion and she will just have more to digest. I mean how could you really expect her to digest fast when her liver and spleen are squishing her stomach

Adriana and her Dad as you can tell she is yellow but soon that will change. She is on her way to get omegaven which as you may all know will really help her as it has helped other kids.

This will be my new place to blog, Adriana has a caring bridge page but you are very limited to what you can upload so I decided it's time to move on up to this. From now on I will continue to write about Adriana's journey on this page. Adriana is doing well for now, she has not had any problems lately. The last one was with her line infection but thank god we had that removed and a new one placed. She finished her antibiotics on Monday so right now the only medications she is taking is her thyroid and iron. I was told the iron is because her hemoglobin is a little low and there is also a study showing that taking iron may also help with absorption. That Is what I was told, I hope it does help her. Her hemoglobin has been low and I was told it was due to her liver. The liver has many jobs and since it is not in tip top shape right now due to her TPN it is not doing everything it should be doing. Adriana will be going to Stanford on the 28th of this month. On that day she ill begin Omegaven. As you may all know I have been trying to get it for her all of this time and now she will finally be able to join the club. Her bili is at 6.4 that was from her lab work yesterday. As for her feeds are at 2ml an hour for 4 hours, they are giving her trophic feeds. This is the best she has ever done with her feeds, they have tried many times feeding her and all she has done is dump. It looks as she is not dumping right now, although it is not for nutrition reasons she is taking it very well. Her ostomy output has changed, it varies day by day but it comes down and goes back up to her normal number. Her urine as well is good and it seems as her body is responding to her feeds. The doctor feels as if we are headed in the right direction with her feeds. Only time will tell how well she does or what she is capable of. Adriana is being seen by a PT and OT, hopefully they can help.