More Info On What Is Going On

Hello again. Well the last time I posted I thought we were going to do a Picc line today but turns out that they did not have enough time to get it done today so early tomarrow morning they are going to do it. It is a simple prodcedure done in 30 minutes, and I have talked with a mom who her daughter has the same thing. http://www.nlm.nih.gov/medlineplus/ency/article/007243.htm Here is the website on what a Picc line is I just hope this link works.. I have no idea what I am doing ! Ha ha.
Well other than that nothing else is going on, she is smiling again today and back to her normal self. So that is that and I will let ya know as soon as I can what is going to happen from here on out. Till next time

Sincerely,
Chantel R. Conn

Up at Doernbechers To Stay Untill The Liver Transplant

Hello again. I have some news since the last time I posted. When we were comming home from Stanford I noticed that her belly was growing again. I let this go for a few days and then called up at OHSU. They in turn told me to go see my Primary Care Physician and to see if I can get in to see him so he could asses her. Well we got into the Dr. on Monday and then they got her in. The Dr said that the acities had come back and that he was going to call my liver Dr. up at OHSU. She did talk to them and then talked to me and told me that she wanted me to pack my bags and wanted me to take Trinity to OHSU for a long term stay until she got the liver call. So now what is going on is that she is up here, has the Ng tube back in her nose, has an I.V line in her right arm and now they want to put the PICC line in her so they can quit poking her every morning to draw labs. So they are going to get this done sometime this afternoon. The Dr also said that her PELD score is going to be elevated beacuse the blood results were getting worse. So anyways the nurse is in at the moment so I am going to close this. Till next time.

Sincerely,
Chantel R. Conn

Website To Lucile Packard Childrens Hospital

I forgot to mention the website to the hospital she is going to stay at. Also just a note the Dr's. also told me yesterday if any of the family or friends have any questions, don't hesitate to call or e-mail them with any concerns or questions.
The website is http//:www.lpch.org.

Chantel R. Conn

Along with some good news comes some bad....

Hello again there. Today has been wonderful and scary at the same time. Trinity is doing good today on not getting sick and tonight I have talked to the Dr because of a concern that I had today about her poop being grey and they said that is not a concern at all and she asked how she was doing about getting sick and I said that she has not got sick all day and wondered about the Ng tube. She said that I can hold off until the weekend and then come and see her on Monday at 2pm. The Dr also told me that her 1 medicine out of several had to be increased and that was about it. As for the phone call from Stanford people down there, a nice lady called me to inform me about Trinity's PELD score and that determines how far up she will go on list. Anyways she told me that she was 27 now instead of 23 on the score and that by the results of her lab work from yesterday at OHSU that she is indeed getting more sick. Yesterday I did also ask about the living rate after liver transplant and the Dr's said that she should thrive as a normal person, with taking several medications. So that is that so far and my gut feeling is that it is going to happen within the end of November or sooner. Thank you again who all are praying for her and I love all my family and friends for supporting us during this trying time.
Till Next Time

Sincerely,
Chantel R. Conn

Getting Back To Oregon

Hello again all. I am now currently in Yuba City with family and am going to head home sometime tomarrow. Trinity is doing fine and we are going to meet up with the Stanford team on Thursday at 11:30 in Oregon. We are just going to go ahead and keep the appointment even though I have already met with them and going to also meet with my Dr up there as well so we can all be on the same page. As for Sissy (Trinity) she keeps changing as the days go by. Now she giggles at you and sometimes I can even get her to blow kisses. She is the cutest baby... ( yes Mommy loves) I was a little peeved today cause I did not get released by the time I wanted to but at least I did get out of there today. So all is well and that is all the news I have for now. Till next time pupils...

Sincerely,
Chantel R. Conn

Going Back To Oregon!! WHOO!!

Hi again there pupils. Today is going ok, kinda had a rough night yet again thanks to sharing a room with a lady and her screaming kid. Trinity slept through it per usual and then at 6am we had construction going on... I finally woke up to 7 Dr's. in the room staring at me and they let me know what was going on. They said that her fluid intake wasn't good enough for them last night so they want to put the darn NG tube back in her. Yes and I just took one out yesterday cause they said she was doing ok.. (SHOOT..RIGHT) They also said that I can be released tomarrow, which in turn is good since my Mom and Dad were headed to Visit my sister in Yuba City down here. So I get to hitch a ride in open land back home with them. I am happy about that cause I'd rather drive than fly anyday. So that is about everything that I can say and things are looking really good so far. Well all.. Till next time.

Sincerely,
Chantel R. Conn

Dr's Finally Gave Some Answers!

Hello again. ( I never know how to start so thats just what I have come to say over and over again XD!Its like a broken record.)Anyways back to what I am on here for, Trinity is doing very well. Infact so well that I got to pull the NG tube out of her this morning, the very one that I put in. They said that as long as she is getting 300ml which comes out to on average 10 oz in a day or more that she no longer needs it. They also have discontinued the Thick It mix and the Polycose also that I was mixing in the bottle. They started her off slowly with just normal amounts of formula that a normal baby would take and just today bumped it up to 24 cal which comes out to 1/2 more than normal. They also said that they did not know the exact place that she was at on the list but that the list was really short and the Dr expected to have her a liver with in 1-2 months. He said other than that she is doing well. So that is all I have so far, and I will know more Monday or Tuesday this week. Will try to keep you all updated as to what is going on. Well that is all until next time.
Sincerely, Love, & Peace
Chantel R. Conn

Doing just Fine!

Hi again. We are doing ok as for now. I just got word yesterday that she is healty enough to go through the liver transplant and we are now listed as of yesterday. One thing that I wanted to bring to friends and family's attention is that we could possibly sometime down the road get a phone call for a liver , get here to California and then get sent back home. They said that is a possibility and just to be aware of that. If and when she does get a liver transplant she will be on anti-rejection medication for the rest of her life . Also her immune system will be way low and she will have to stay away from sick people ect when she has that done. As for now I am waiting for the Dr's. to show up and ask 50 billion questions so I know what is going on and when we will possibly be going home. I miss all my family and friends and can't wait to see you all again soon when we come home. I will talk to ya soon and anyone don't hesitate to call me. Till next time.

Sincerely, Love Ect! XD,
Chantel R . Conn

Mother and Baby at Childrens Hospital

Hello there. Well this is the 3rd time that I have tried to post and all the sudden it erases it so I had to come out in the lobby and try it this way. So far some of you know that I was comming here to Palo Alto to just get an evaluation and come home. Well as of right now it is not going that way. I was noticing Trinity's belly grow a little on the 14th before we left and today it is just huge. So after all the people that I met today the Dr's were last and I told them that I did not feel safe flying her in that condition so they are keeping me here untill futher notice. They are going to meet tomarrow and talk about Trinity and her liver transplant evaluation tomarrow so I will know more about that then and update it all at that time. If any one wants to chit chat or just e-mail me please feel free to do so. I have much time on my hands and wouldn't mind a e-mail or phone call at all. Other than that so far nothing is going on. Well anyways till next time!

Sincerely,
Chantel R. Conn

Arrgggg Nasty Cold Time

Hello again. Today is cruddy. I some how recieved a cold from someone and I have no idea who from. But in return I did hand it over to my husband as well, on accident.
As for Trinity she is doing ok. She keeps getting sick between 3am-4am, like clock work and I am doing laundry around the clock. She is smiling still and is happy, but she still does have a bad diaper rash from the Hospital and she cries when I change her. We are still as far as I know going to Stanford Universtiy. I still have not heard anything from the Oregon Health Plan lady or anyone else for that matter, probably beacuse it is Columbis Day and they are closed. Other that that no more news that my stuffed up head can think of. Well, till next time.

Chantel R. Conn

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