Good news

So today we had GI clinic it actually went very well. Nothing but good news came from it. Adriana will not be off TPN for 4 hours so she will run 20 hours. It gives us a longer brake and able to enjoy her without any tubes to detangle her from. She is doing very good on her 3cc's of pregestimil that her Dr. told me we will be bumping her up 1cc every week to see what she can tolerate. her new number is 350, it went up 50 from our old number. He is also thinking of placing a gt tube as well. As she becomes more dependent on her formula her NG will not be as dependent as her GT tube. Keep your fingers crossed and hopefully she can tolerate her feeds and then no more tpn. One day she will be line free it may not be tommorow or the next day but some day soon she will. As for her lab she finally has normal lab numbers, NORMAL bili can you believe it? Such beautifull news, nothing but good news did we have today. She will continue to be on ethanol once a week for 2 hours. I was told 2 hours has the same affect as 12 or 4 or 6, so it doesnt make a difference. They only use 2 here at our GI clinic for all patients. So jumping off topics friday I will bump her feeds to 4. Wish her the best of luck.

Nothing new with Adriana she is doing good on her 3ccs of milk which is great, Little by little her feeds will go up and we will be able to really tell what she can tolerate. Can it eventually be enough to get her off tpn? I don't know I guess we just have to wait and see.Every day is something different with her, she makes new faces, new noises and it nothing but a ton of giggles. Although she has a medical condition she lives a very joyfull life filled with lots of love and laughter. It looks like nothing is wrong with her. When we go out and people stare at her I of course get annoyed and she doesn't seem to mind. Better forher more attention which she just seems to love. But don't ignore her because she will scream her little head off. We have GI clinic tommorow and we will see what they alter her TPN to. The ethanol lock seems to be just fine, i finally found a way that helps me be able to draw back the ethanol without fighting with her line.

3ccs of pregestimil

I bumped Adrianas feeds to 3cc's continuously yesterday around 1:30pm. She had been on 2ccs for almost a month now and so I thought what difference would it make if I bumped her up this week before we see her GI in clinic on wend. I know he was going to let us bump her to 3 on wend anyways that was his plan. So far so good, she should not pass 300 for her ostomy output and so far she has 161 and at 4pm it will be 24 hours and I will see what the total is. I hope she doesnt reach 300, if she doesnt reach it then it means she is not dumping and is able to tolerate 3ccs. Keep your fingers crossed. She has never been on 3ccs and been able to tolerate it. the last time she was on 3ccs she started to dump but she was an inpatient ad being evaluated for transplant. Tey had to do all of these GI studies on her meaning they had to fill her up with alot of ink contrast, so I think it was not accurate. The only reason I think she was dumping was because her body was taking much more than 3 and a lot of other junk for her tests. It took 3 or 4 days to get all of the contrast out of her system, so she was still processing it. Now we will be able to reaslly tell if she could tolerate 3 and on and on. This will be what will tell us how much she can absorb, which I hope all her intestines needed was time. I have plenty of faith in her because she is a fighter as you may all tell by now. This will also determine if she will get a gt-tube placed and get the NG out of her nose which of course she hates.

Nothing new

So far so good, Adriana has had a cold but seems like it is not getting worse, maybe even better. She use to have some hard times breathing at night with her nose being so stuffed but has been sleeping just fine these past few days. She has not had any fevers or anything of that sort. She has been having a really horrible smell come from her mouth lately, as well as the ostomy bag. I called GI but they do not feel concerned or think it might be BO. I was told if it were to be that there should be some kind of tummy, pain a lot of gas and things like that. She does not seem to be uncomfortable at all, just a very sticky smell. We will be seeing GI on the 14th and they will see what they think. They do not feel the need to bump her and see her this week, since they cant quite link it to anything. She has been fine and of course easter rained all day but we did have a good easter. Her feeds are still at 2cc but she has been doing fine with that, no dumping and still under our 300 number. Which is always good, hopefully on the 14th she will be bumped to 3 and on and on.

So we used ethanol lock last week as well. It is not as easy for me to pull back the alcohol as I thought it was. If anyone has any suggestions please give them to me. I would be very much appreciated. Adriana is doing well but seems to be catching a little of a cold. Her dad gave me a cold which I feel and have been feeling very yucky and of course it was just a matter of time for her to catch it. I have to suction her nose 3 to 4 times a day because her nose gets very stuffy and she get's mad. We will be seeing her GI doctor on April 14th and maybe most likely going up on her feeds. She seems to be doing fine but of course she get's very very gaggy and I feel horrible when she get's like that. Here are some pictures of her that I took when I did laundry the other day. she is my little helper.


She watches her hamper for me



Watching me from the little hole


She loves laundry days, but I dont

Thursday was the first time I started Adriana on ethanol lock, it was a very long day for both me and her of course. So at 7 she was off and I started the lock and at 9 I was trying to pull back the ethanol from her catheter which was hard. I pulled and pulled and moved her head side to side which at this point she was not happy and it did not make things easier. I was able to remove all of the ethanol from her line. I then tried to flush her line to connect her TPN but to my surprise was not able to flush, I tried to pull back and then flush and nothing it wouldn't go in. I tried a couple times and no luck I called one of our home pharmacist/nurse she told me to take her to the ER that most likely her line had clotted. We got to the ER around 10pm and on our way there I called the GI on call and let him know we were on our way to the ER and for him to update our GI when he had a chance. When we reached Childrens in oakland I explained to the triage nurse what was wrong with Adriana and why she had a broviac and she took us in and then about 20 minutes later a nurse came by and took a chem stick to check her sugar levels, she had been off for about 3 hours and was at 81 they were happy with that. They did not feel they had to start a IV on her, so they tried to flush her line with no luch and then they tried to flush it with TPA med which is used to dissolve blood clots for many different reasons. He tried pulling back and flushing many times untill he was able to get the med in, he let it sit for probably an hour and then came back to remove the med. It seemed to have fix her problem, her line is now still working and she seems to be fine. I tried to explain to the nurse what I did and asked if there was something I did wrong of course I felt it was my fault. I felt horrible but he told me not to beat myself up for it. He said it was not my fault things happen no matter how carefull you are. He said unfortunately not all babies come with broviac catheters so of course your body is just doing what it is suppose to, which means your blood clots. We were discharged at around 1:30 am and were home around 2:15 or so. Things went the best way they possibly could of gone, in worst case the line wouldnt be able to unclot and they would have removed her line and placed a new one. That line is her second one and fairly new, it was placed in sept so its about 6 months old. That is how long her first one lasted, they couldnt get it to unclot and it was infected as well. Well I will update later since its time for Adriana to get up.

Adrianas fun in the backyard

Below are some pictures of Adriana enjoying being outside. Since it has been cold lately she hasnt been able to really go out but its nice today.