It has been a while.... well we are all doing well Adriana is doing good.Aug has been a very busy month for her, she had a lot of hospital admits this last month. She was in with a line infection for a week then back to check gtube placement. Before that she was in for a week since she had just had her gtube placed. So far so good right now, yesterday she finally got her mickey placed. It beautiful compared to her high profile mic...not as cute. I will post some pictures of it... Adriana is now down to 16 hours on her TPN and 12 on omegaven. She is growing really fast and looks great, she is advancing and every day has something new for me to see. I will bump Adriana to 18ccs on her feeds today, that is where she was before surgery.. we finally made it. Now we will continue to advance and see how she does with more than 18, hopefully she does well. I cant wait untill we can start her bolus feeds, she will be line free during the day at times, wow How I would love to have my daughter line free. The smallest things can make a person very happy...Adriana is also starting to drink water...I will give her some drops on her lips and she will suck them in, as for some ice cream which she only takes from her dad. She does not crawl yet but will just rock and really just wants to go....she does stand but not yet walk or cruise, she is scared to.Adriana has been doing great and she has come a long ways.. from now being able to be cycled from her TPN running 24 hours to now 16 hours and not being able to tolerate 1cc to 18ccs....my true miracle.

It has been a while.... well Adriana is doing well she was in for a line infection at the beginning of the month. She was just in again for the gt tube. They checked for placement to make sure it was still in the stomach which it is. She was discharged yesterday and just took a bath and a nap as well. They were not able to switch it out for a mickey quite yet because she has granulation tissue and most likely will not let the mickey sit correctly. We will hopefully get it s/o on sept 1st lets just see how things go. Adriana is not at 14ccs and our goal is 18 well she can tolerate 18 so past that to hopefully get rid of her line and tpn.

Adriana got a line infection the day before her GI appt. We took her to the ER and she had blood drawn and we were admitted. It came back positive for gram rod posotive cocci. Well she was on vanco and her fevers stopped they lasted for 2 days and she looked miserable. As her fevers went away she started to feel much better and act like herself. We were there for a week and finallu got out last Tue. i was so happy to get out we had some very crazy and horrible things happen to us. Adrianas broviac broke, well it didnt brake a nurse busted it. How? I am not really sure she said she was flushing it and it busted she may have been flushing it with too much force for it to brake, of course it was the skinny part that broke. They repaired it and her line is fine as of right now but of course I was really mad. I have been takeing good care of her line for a nurse to bust it in 2 minutes. We also had some nurses that did not know what to do with Adriana or her broviac. Next time when we get there I am going to ask all her nurses have you ever worked with a broviac? I am really tired of all these nurses that think they know what they are doing with her and really dont. Ugh it makes me mad and frusterated because they dont want me doing Adrianas care in the hospital. When I asked for some Saline flushes to flush her line the nurse gave me a blank stare and asked me why do you need them? i told her to flush my daughters Central line.... she then said Oh no no I will let your nurse know. I told her you know what my daughters infusion has finished 5 minutes ago and we yet have a nurse to step foot in the room and I dont want her line to clot. I then told her I do it all the time so I didnt need a nurse. She would not give me a line flush..ugh I had more experience working with the line than she has so whats the deal? Dont you just hate when that happens. Well we are finally out and running antibiotics at home... She is on Vanco the eclipse balls so since I already have taken those home it was easy. Adriana is on 12 ccs cont but I will bump her to 13 today and hopefully by the 18th we will be to 18ccs. On the 18th we have a GI app and will also see the surgery team, they will give Adriana a mickey that day and take a look at her gt tube site. It has some dreadfull granulation tissue. I am putting some Hydrocortosol I think it is called which will help it not be so inflamed.

Adriana after getting out of the Hospital

It has been a while since I have posted anything on here. So here we are now with a gt tube all going good with it. I love it makes everything easier from her not tugging like she use to on her NG tube. She does like to play with the line but does not tug on it, weird huh??? well anyways I am working on advancing her feeds back to 18cc where she was before gt was placed. I just bumped her to 9ccs and lets see how she does. 8ccs was fine so lets see 9, her ostomy output is a little higher than when she had her NG tube which is weird I dont know why but we have clinic this wend and we will see her GI doct and also the surgeons. Her GT is fairly wasy to care for, I turn it once a day and clean it 2 times a day. It is a very good fit so she does not have a lot of leakage around the site. Maybe a little milk but not much so I dont have to put a gauze or anything I just take it so it doesnt come out. She will get a button in 6-8 weeks I think they had told me once. Well Adriana got a bathing suite and a pool and we decided to out her in in. Our GI doctor was ok with it.. no questions asked. I changed her put some tape arounf her tegaderm and in she went.. she splashed for a while and played she loved it. The best part for her was when her dad got in with her. She went crazy but then it started to get a little cold so it was time for her to come out. It was a success so she can continue to swim.... I then changed her dressing even tho it did not get water under the dressing and also changed the cap.

Before and after surgery

Thought I would post a little something filled with some pictures of Adriana...


Yes before NG was removed..




Adriana taking a nap without her shorts but kept her sandals on..





Adriana now.. NO NG tube...

long time

I know it has been a while since I have posted anything on here but our life got kinda crazy for a while. Adriana is doing good she got her gt tube placed last week on the 6th and not all went as expected. They tried lapriscopicly but due to her haveing too much scar tissue they were not able to. They had to make a insicion in her tummy and they had to seperate her stomach from her intestines. the surgeon said they were fused together by a lot of scar tissue. In order for him to place the gt tube he had to seprate them or if he would have placed it he could of punctured something. That would then suck even more... so surgery went well and healing too. The gt tube was a set back for feedings tho, when she went into surgery she was able to tolerate 18ccs cont which is about 14 oz 4 ml a day of course. Now she is only able to tolerate 6ccs cont which is about 4 oz or so. I was told since they did mess with her stomach and intestines it seems to slow down makeing her not able to tolerate much feeds right now. It is not a permanent thing but I have to slowly bump her up to 18 like I did before. With some time and enough healing time she will be back at 18cc. We know she can tolerate 18ccs so moslt likely she can tolerate more little by little. They altered her TPN to adjust the calories that she can tolerate thru tube feeds and so she will continue to gain weight of course just get a little more from her TPN than milk. Other than that she is doing great and I am starting to get a hang of her GT tube it is not as hard as I thought. The hard part is to watch her to make sure she doesnt get her hands on the tube and yank it out. It is still fresh so I wuld have to take her to the ER to get in fixed and checked for placement.

18ccs went ok

Like I had mentioned Adriana went up to 18ccs on her feeds which is 14.4 oz a day. She seems to have put out a little more than when she was on 17 but its not a big difference. I am going to keep her on 18 untill next week and then bump her to 19ccs. On our last attempt at 18ccs she put out a lot all of the sudden so it got better this time lets just see what happens. Adriana is doing good but she just cant stay still at all. Any where you put her or sit her she finds something to tug or play with, which is usually her milk tube. She will bite it and play with it. I put it behind her and just some how she manages to get it so I need to make sure to keep a eye on her. She is now being cycled for 6 hours which is great so i dosconnect her at 3 and shes off till 9 pm. I enjoy it and it makes it easier for me to put tank tops and stuff like that since her line is taped down and disconnected at that time. I run her line over her shoulder and across her bag since her ostomy bag is also on the left side just under her central line. Why the surgeon placed it there? who knows only he does why he did, but I've learned to manage. She will be getting her mickey placed on tue so lets see how I manage to do that, just something else to add to her. We will get rid of her NG tube ( the yellow line in the nose) is feeds her milk. That I am sure will make her much happier to not have, since of course it bugs her when she sneezes and coughs. She has been a trooper with keeping it in these past few months. I replace it 1 time a month and it doesnt come out untill Its time for me to replace it. Of course she scratches the tape untill its almost off but then I know its time for new tape.