Still Up At Hospital....

Hello again! Well as of tomorrow Trinity will be a Doernbecher Hospital for a month straight. I can't believe the time has gone by so fast. Well so far as of what happened last week I had a really crazy time with what was going on with Trinity and got told so many different things. The week before last she went under another Liver Biopsy to get 2 more samples to see what is going on with her. Then here last Wednesday they told me that the Pathologist at OHSU said that they were sure that she was rejecting her liver. WOW! So then I had to call Red Cross to have them get a message to him letting him know what was going on. ( He is in the Army National Guard and was in South Carolina at Fort Jackson going to basic training.)Then he finally got home on Friday. Then before he came home they finally got the slides down to Stanford University and there Pathologist said that she is not rejecting her liver, and that they are going to run more tests to see what is going on with her. They are also concerned about her gaining weight and since she has been off the steriod Prednisone her apatite has dramatically decreased... The most she will take is 4 oz every 3 hrs, and that is just some of the time. Before they took her off the steroid she was taking 6 oz every 3 hours. I still have no idea when she is going to get better to be sent home. I just feel like they are scratching their heads and don't know what to do. Her CMV virus that she was hospitalized for here 4 weeks ago, the majority of it seems to be going away, but her ALT and AST scores have jumped sky high compared to what they were when she was just starting to have CMV virus. Her GGT scores are O.K and they have settled down, and her Biliruben levels and CBC are fine. Before she had the liver biopsy though, she did have a blood transfusion of 0+ blood beacuse her white blood cell count was low and she was getting mild anemia. She looks great now it's just getting her to eat. I really want them to go back to the NG tube but the Dietitians said that would be putting her a step back and they changed her formula to Neocate now instead of Pregestmil. I think it smells and I'd bet it tastes worse. Then they just added here this week Polycose to her formula to give her more calories. I just wish I could make her better so she can come home and we can all be in one place instead of us being here and going there and so on. But such is life I guess... Other than that she is doing fine. Donny let me kinda have the night off and I have our son here at home so he can go to school tomorrow, and I need to tidy up the house a little. So we will take turns till she gets to come home. Cause up there you don't get much sleep at all. Well I need to get some rest. Sorry it's been so long since I updated!! I will try and work on that!
Till Next Time.

Live..like it's your last day
Laugh..till your stomach hurts
Love..like you have never been hurt

Chantel R. Conn

I am Seeing You Next Year!

Hi there pupils... Well we are back at it, back to the hospital we went on Monday December 29th 2008, up here at Doernbechers at OHSU. So far what is going on is that she had to be admitted because her liver enzymes were high and they did not know if it was early rejection, so they wanted us to get in here as soon as possible. So we did that and had to wait until the next morning for an ultrasound to see her bile ducts. Those turned out fine and then they did some blood work to see how her Prograf (pronounced Pro-gr-af) levels were and those are kinda hay-wire. so they think that she now has a virus of CMV (Cytomegalovirus, it is pronounced Cyto-megal-o-virus) that is one of some viral infections that occur most frequently in transplant patients. It shows is ugly rear end in the first months after transplantation. She will now also have this to deal with for the rest of her life also. She is being treated for it now as we speak and looks like her liver enzymes are going down 2 points and we will get a better picture as the days go by. This treatment could make it go away and only show this one time or it could stay around for the rest of her life, at this time the Liver Team does not know this. Only time will tell. This virus is also in the family with the herpes virus as well. Also to note this happened also because she is immune suppressed due to her having the medicine Prograf so she will not reject her liver. Just some more mountains to climb for us but the way that I am handling it is that " The lord only gives you what you can handle". So I am dealing with it doing OK for the most part, just really not looking forward to Monday when Donny leaves for Basic Training. Going to be a really hard day. 4 months to me is going to seem like decades... anyways I'm going to sign off here I really need to eat and get some rest. Till Next Time.

Live, Laugh , Love,
Chantel R. Conn

Been A Long Road!

Hello all again! Sorry I haven't been blogging lately, just really busy with the holidays coming up and being stressed out with my husband leaving here for 4 months to join the National Guard it's been crazy. It's snowing like mad out side the window at the moment and about 2 1/2 ft of snow and this we are not used to at all nor were we prepared in any way. Trinity is doing well she is thriving well and for the past couple of days my Husband, Son, Trinity and Myself, have been staying with my parents for a bit just in case the power decided to go out at our apartment we would have no way to heat our home, that and Donny has been towing like mad. OK anyways enough about that, back to Sissy. She got spoiled here a couple of days ago and my parents bought her an early Christmas present. It is a bouncy seat kinda like a Johnny Jump up, but it sits on the floor, and she talks and babbles and bounces away. It's funny though cause her feet do not touch the ground, so we are using my Dad's drill case so she can touch the ground. She says Momma Momma now when she is mad or tired, I'm just trying to get her to say Da Da before Donny leaves us after the holidays. So other than that not much going on, we got home before the snow hit the hills so that was a plus. We left Palo Alto, Ca on Dec 11th and got home the 12 to my parents house at about 7:30 am. We were tired but I was Thrilled to be home! It felt so weird to be gone for almost 1 1/2 months.. But even with this snow it is good to be back home in my "Comfortable Environment"! Well gonna close this or I'm going to go on forever! Till Next Time!

Every one Merry "Christ"mas and One Heck Of A Happy New Year!

Live, Laugh , Love,
Chantel R. Conn

Peter 1 5:7

Very Graphic Liver Pictures " NOT FOR THE WEAK STOMACHED"

Hi there one more time. Here are the liver pictures for the viewing audience. Please if you get sick easily please do not look at these. It is not very gross but I would feel really badly if some one did get sick

1)This first picture is of it on the cart. To the left of you in the bag that is sort of tan is a healthy adult's liver, and to the right the pieces of green are Trinity's liver.

2) This second picture is a close up picture of a slice of her liver. (They already had this cut up in pieces before I had arrived and 2 pieces are missing since they are doing tests on it) On this picture the top right hand side of this piece is where her gallbladder was sitting before her Kasi procedure. The pieces of it still are sort of there. The brown in the liver also is from rotting and where her bile duct was located before the Kasi Procedure.

If you have any questions please e-mail me and for my family you can call me. I would love to answer them.

Chantel R. Conn

Seeing My Daughters Liver

Hello again. Today was a really weird and awesome day. I finally got a phone call from one of the Social Workers from down here and she called cause she spaced to tell me what time it was to see my daughters liver. I finally arrived at 11:05 am and then got lost finding the place and had to ask 3 different people how to get there. I arrived in the spot and had to wait a minute because of another family was in front of me. They seemed to enjoy it, and the lady that saw her son's liver said it was an awesome experience. I got back there and it was only 5 feet in the door. They had it covered and asked me if I wanted to see it. I of course said "Yes", and they uncovered it. It was really weird, there was to my left on the cart a packaged healthy adult liver and then covering the rest of the table was the rest of my daughters liver. The guy that was showing me the stuff said that there were 2 pieces missing cause they are biopsying it and taking slides of it and he also showed me where the gall bladder sits and where her bile duct was sitting on her liver as well. I rattled the idea around in my head about if I should put these pictures up on the internet and I decided that I would. So these pictures are not for the sick stomached people. It really is in my book for educational purposes only. Well gonna go do some laundry and pack some stuff up to get ready to head to Oregon possibly this Friday!!!! I'm so excited!! Till Next Time!
Live, Laugh, Love,
Chantel R. Conn

Getting Ready To Go Home.... Maybe....

Hello there. I haven't been on top of updating all of you and for that I apologize. It's not that I haven't been real busy or such, just spaced it off. Well we went to clinic last Thursday at 2pm, and while Sissy's name was being called she decided to get sick all over her clothes and over her car seat. I was really embarrassed since the room was packed full of people trying to get in there and my daughter is covered in puke. I'm guessing that I was to much in a hurry to get there on time and really didn't take my time to burp her, and from that I learned a lot, but it didn't stop there. THEN what happened was got her undressed, knowing me I forgot the wipes but luckily the nurse had a ton of some in the weighing room, got her weight which was 10 lbs 10 oz, went to clean her up some more and picked her up and yet again she got sick all over the table. Thank goodness there was paper down and the table was made of fake leather. Got that cleaned up and went into my room where I waited for a good 20 minutes, finally the team somewhat show's up at at time and they tell me that her weight isn't good enough and they still want to see her progress some more. WHOO! O.K really I am doing what I can but Sissy wants to eat when she wants to eat. I wake up at 7am turn her feeds off go back to sleep for 1 hr (since she wakes me hourly just so I can find her Binky and put it back in her mouth) wake back up at 8 am give her the Prograf (which is the anti rejection medication) and then fall back asleep until 9 am and then feed her a bottle of 4 oz. Then at 12 noon I try and feed her again and she refuses to eat it. Then 1:30 rolls around and she is ready, then at 3 she is still to full to eat and then she decides shes hungry at 4:30. Then 6 o'clock time for another feeding and she is full still. After that 7 o'clock rolls around I am not able to feed her until 9 pm cause she has her Prograf at 8 pm. With this anti rejection medicine, she is not able to eat 1 hr before the medicine and 1 hour after it so her body can absorb all of the medicine. It's kinda strange, and from what I got told from the Dr's. down here and other family's that Stanford is the only ones that do it that way. So well hopefully I know when I am going home some dang nab time, would be nice. Also Tuesday I am going to see her liver in real life, some think I am weird but its really just to see what was really in my daughters body and how bad it was. Still thinking about posting pictures of it on here, don't want any one getting sick over it ! HA HA! Well Till Next Time.
Love,
Chantel R. Conn
MERRY CHRISTMAS!!!!

Thriving Beautifully!

Hello all! Today.. well yesterday was a really good day since Trinity is doing well. the blood work shows that she is not rejecting the liver from her 2 blood tests Friday and Wednesday. She is starting to laugh out loud now which come to find out I found out the hard way. Stubbed my toe on the end of the bed and boy did she think that was funny. So now all I have to do is slap my hand on my leg and say "Ow ow ow" and she belly laughs. Right at the moment she is having a very good babble discussion to her binky, its very cute! Still no word on whether or not I am comming home. Was a little disapointed today cause when my Family was here they said that I could see her liver this Tuesday.. well come to find out they wanted to kill 2 birds with 1 stone and they are waiting till NEXT Tuesday to take me so another family can go as well. Also for the bad news with Sissy.. she lost 7oz between Wednesday's apointment through yesterday's clinic apointment. Have no idea how that happened at all. But like I said other than that she is doing fine, her owwie is healing well and maybe by Thursday she will have her Bile bag capped off! Wouldn't that be nice! Ok gonna try and sleep again... Till Next Time!

Live, Laugh , Love

Chantel R. Conn