More Updates

Hello again. Today is going ok. Got Trinity up this morning at 9:45am and got ready to change her and the phone rang. It was the Oregon Health Plan lady calling me back to let me know that they are still working on transportation to get me there to Palo Alto, Ca and that she would be calling me through out the day. I was still conversing with her and I heard Sissy crying. Ran in the bed room and she got sick all over everything in her crib and had the bad case of the Poo poos also! ARGGG!!! Told her I had to go and for her to call me back. Got her in the tub and gave her a warm little baby bath and got her all dried up ect. Then the Dr's nurse from OHSU called and was conceirned about Trinity being lathargic and wanted me to take her to the emergency room. I was supprised and told her she is only non active when she gets done being sick. They still want me to have her checked out to make sure she is ok. I have to go get her weight checked in Carlton. Other than that no more news. Till next time.
Chantel R. Conn

Trinity Anne Babble (July of '08)

Today Good News!!!!

Hello there. Good news Oregon Health Plan lady called me an asked me if Oct the 15-17th was ok for me to go down to Stanford University to go for the Pre-Op.I said that was fine and they are now getting the tickets for me tomarrow. So that is what is going on for now. I am really excited that this is going fast. As for her she got sick last night and then we gave her a bath, got her dressed and then she was fine for the night. Then Donny and I got her up this morning at 8:30 and sat her down on the bed and then Blahh... with in 4 minutes she got sick 4x all over the bed all down the sheets, the dirty clothes. It was a mess.. Other than that she is doing ok. She kept her bottle down this afternoon and seems to be keeping the 2nd one down also. She hates the Ng Tube and tends to pull on it during the night and day. We got these things from the Hospital that I asked for and that she had during the Kasi procedure the nurses call them "No No's". They hold her arm straight so she can't pull out her Ng tube. It's better than keeping her blanket tight next to her arms, and then she sweats and I think usually she is potty. Anyway so far so good. After this is just waiting. Never know though we could get lucky and get one while we are down there for 3 days. Till next time

Chantel

New Updates On Trinity

Hello all again. Sorry I haven't blogged for a few days. Things got crazy up at OHSU. Well as of right now we are home. I had to fight the Dr's. tooth and nail cause they didn't think that I had enough support at home and were worried about me doing majority of the work with Trinity. I am ok with it and am going to have all the help from friends and family I need I told them. Today in 1 hr time I got told 2x yes I was going home and then 2x no I wasn't. I got lucky today at 3pm and saw my liver Dr. passing my room. I stopped her and let her know that I was upset and I really just wanted to go home today, since that is what she told me on Saturday. She said the same as I mentioned above about having help and I told her that I was ok with everything. She talked to the team and then let me go home... after talking with a social worker and making sure everything was good at home! I then finished my conversation with the guy that helped me with the machine for at home feedings. He was a really nice man, and explained things really well and that made me feel comfortable with me going home even more. Well for the time being she is in the front room in her pack and play and she is getting her feedings by the machine. She is fast asleep and doing well. Tonight though Donny and I had to change her face dressing so it can keep the tube tight to her face so she can move her head with out her moving the tube. As for now all she has for the machine is 12 hr night feedings and then can be bottle fed during the day. On Friday I go into Carlton to the local Dr's. office to get her weighed . Next Thurdsay I then go at 9:30 am to my regular primary care physician's office to just make sure that her belly is not gaining any more fluid or distending and also to get her weight. Then the next week I go into OHSU and see the people that are comming up to there from Stanford University to just do a day clinic and I have no idea what time it is going to be for they are going to schedual it and call me with the time. Then after that ... the people at Stanford University are going to schedual me to fly down there for the Pre-Op ect ect.... So anyways that is that and we will see what tomarrow brings. Oh and just by the way the only reason she has the Ng tube is because of nutritinal reasons and for her to put on some more weight faster.!
God Bless

Chantel R. Conn

More Updates

Hello there. Today has been OK this morning she threw up as I was walking in the door. All over the floor and all over Mommy! Then I called the nurse in and she helped me clean it up. Then I gave her a sponge bath and changed her diaper. Then we finally fell asleep at 2:30 am. Today she has been doing well. She got stopped on her formula at 6 am this morning so they can do a x-ray of her stomach and bowels to see if there is any obstruction causing her to vomit. Good news is there is none and she is good as gold there. They wanted to see the medicine they gave her down to her Colon so they are going to take her back to x-ray here at 1:30pm. They did take her I.V out of her head and she doesn't need it any more. Other thing is I probably wasn't listening to the Dr. very well. She said that on Oct 23 that I don't have to stay over night. Its just coming in to the clinic so I just wanted to let ya all know that. At the moment we moved to Rm 24 and we are on the South part Level 9 just in case any one wants to come visit us. She is napping at the moment and she is in good spirits and in God's hands.
Well talk to ya all later. Till next time

Chantel R. Conn

Trinity Update

Hello there family and friends. Ok I have lots of information for Trinity from my liver Dr up there at OHSU. Ok for 1 Trinity is doing o.k as for the swelling in her belly and it is going down. WHOO Praise GOD! For 2nd she has been getting sick last night and into the early morning and that isn't really good but there is good with the bad, she is now 11lbs! Last night my Mother spent the night with me and helped out, which I appreciate very much, and that was fun to have some one up there to talk to. The Dr came in this afternoon and talked to us and told us that we will probably be going home on Tuesday and in the meantime she is going to have a scope put down her throat and see if she has any blockage causing her to get sick as much as she does, and then possibly tomarrow or Monday she will have an Echo gram done on her heart since she was born with a slight heart murmur and then an ultrasound to see how much fluid is left in her belly. Then I will be getting a good teaching on doing the NG tube since she is going to have that till she gets the transplant. Ok then off to home Tuesday, then we are going to go back up to OHSU at Doernbechers in Portland on the 23 of October since the team from Stanford University is going to come up and check on there paitents that have or are going to have a liver transplant. (They do this 3 times in a year), and be there for a couple of days. Then they will give me a call within 2 weeks to set up a Pre Op appointment for me and Trinity to fly down to Stanford University and stay there for 2-5 days so they can do lab work ect. Then fly back home and then wait for the phone call that the liver is ready to go and fly there fast. So that is the just of what I know so far. Probably I have some more information but at the time that is all I can remember. Oh and I wanted to take the time to say Thank You people who have visited me and Trinity at the hospital. Also I wanted to say a HUGE BIG Thank You for people who are praying for our family and that are having there churches pray for us. I love each one of my family members and friends and thank the Lord for them! I give you all the Lords Blessings in your family's as well and thank you for being here for Myself and my family. We really appreicate all of you. Well till next time!
Love,
Chantel R. Conn

Liver Transplant Here We Come

Hello there. Been awhile , sorry I haven't posted yet, been kinda busy. OK latest news is that Yesterday my Father Vince and I came up here for just a check up. We be known to us they had to admit my little Trinity cause they are sure she has fluid in her belly. Pretty much normal when the Kasi Procedure did not work at all. Dr Eralu (pronounced er-a-lu) said that we needed to admit her and get her started on her lab work and the faster we go the better off she would be. So did all that and now she has what is called a Ng tube down her nose that goes to the stomach to feed her better. I can still feed her normaly but this increases calories and what she needs at the moment is to gain weight so she can do better during the liver transplant. Ok as for the liver transplant we chose Seattle, Wa but they are on a contract and do not accept my heath plan, so now we are flying to Sanfransisco, Ca down to Stanford University! They are paying for it all food and all of that so that takes a big weight off our shoulders. Now its just the fact of when and and then its now. When we go home we have to have the NG tube with us at home so I will be probably staying there untill we get ready to leave to Ca. Update on her at this time, she has the Ng tube down her nose, and she has a I.V in her vein on the side of her head. Then she has a stocking cap over that so she doesn't get a wild hair and pull it out. She is in good spirits and she s the nurses comming in the morning and waking her baby sleep, but she seems fine and her belly has gone down alot since last night. So that is that and hope to talk to friends and family soon. Till next time

Chantel R. Conn