SUPER TRINITY SUNDAY !!!!

Hello there! So is everyone excited about tomorrows game? Well I kinda am but I am really excited that Trinity gets released from the hospital tomorrow!!! WHOO! Hopefully they don't cop out at the last minute like they did to me just before Donny was leaving to Basic Training. I know it was all for the best but makes me kinda fume when the left hand doesn't know what the right hand is doing ... ya know what I mean? Well as for her scores Alt and Ast scores they seem to be steady as for now and that looks good. She is still on her Ng tube at the moment. The Doc said something about it being taken out before she leaves which would be awesome for me, since that is one less thing I have to worry about! I really can't wait to sleep at home! MAN THAT IS GOING TO BE ONE AWESOME SLEEP!!! Even though I am used to being here I still jump at every person that wakes me up.. and NOT being a happy morning person does not help matters either! SO WHOO!! I'd better get some sleep cause tomorrow is going to be one crazy day, hopefully I won't get stuck in traffic and get home in a timely manner! Well everyone take care, and see ya .. Till Next Time.

Chantel R. Conn

Live, Laugh and Enjoy Life!

Here We Go Again...

Update on what is going on. As of this Morning my Husband informed me that they are going to do an Ultra Sound today at 3pm, and that they are FINALLY going to put an Ng tube down her because they say that she is dehydrated so they are going to feed her at night through the Ng Tube and mix her formula and some Pedialite just for a couple of days so she can get hydrated. I had told the attending Dr's and the Dietitian about an Ng Tube here 1 week ago and they said that she would be going backwards. SOOO.. they obviously not listening to me... Finally they take action and do what needed to be done here last week. Then they are going to put her on an antibiotic 1x a week through her Picc line as well. Anyways that is all the information that I have as of now. When I learn something more I will update this as I go along. Till Next Time

Live,Laugh,Love,

Chantel R. Conn

Ok...I will break down the medical terms.. XD!

GGT-is a liver function test used int the diagnosis and monitoring of hepatobiliary diseases. Full name is Gamma Gluamyltransferase.

CBC-is a complete blood test, and it measures the concentration of white and red cells, and also platelets in the blood.

CMV-is Cytomegalovirus. (sight-o-me-galo-virus)Which is a common virus that either you or I have been exposed to. Well in Trinity's case since she is immune -o- pressed she got it and it infected her badly. It is a member of the herpes virus family and can be dormant for a while and then flare its ugly head again. It is not infectious by touch or anything like that and it is not associated with food, water or animals. It is possible she got it from her liver transplant also. Who knows.

ALT- is alanine aminotransferase. It is a blood test to measure if your liver is damaged or not. ALT are chemicals that the liver cells release when they are damaged or sick. ALT is not a perfect test for liver damage, but it shows only the liver cell damage taking place the day when the blood was drawn. And no one really knows how much damage is taking place unless a sample of your liver(Liver Biopsy)is examined.




AST- is another blood test to just be used primarily to diagnose and monitor the course of the liver disease. And the ALT is usually one blood test to go with this one as well.



Ng Tube- is called a Naso Gastric tube. It's just a small tube that goes through your nose down to your stomach. Then you are hooked to a machine that has a formula or food bag off of an I.V pole and it feeds you 12 hrs in a day or 24 hour period.

Him- yes I am slept deprived and I did not say my Husband "Donny", until the last bit of my blog! So yes him is my husband Donny... XD!

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