Hi again. Ya I know I have been slacking on the posts lately... sorry! As of today the liver Dr. has her on Lasics 3x a day, (which is a liquid form for a water pill), and she is getting albumin 1x a day and she is on all day Ng tube feedings. The Dr said that she looks fuller in the face and that they would like to get a picture of her and send that down to Stanford (Lucile Packard Childrens Hospital) so they can possibly bump her higher on the list, which I think is wonderful! Then Child Life came in to visit me and they were looking for family's for some company to buy presents for, since the family's that are up here won't be spending the holidays at home! God bless them for doing that and it really means a lot to me! So got that all done and then the chaplin just came to me and asked me if I need any prayer requests, and I just said say a little one for Trinity! So now it is off for me to get clean and eat breakfast. Ya I know its late... what can ya do right? Then I am going to go down and get my camera so they can use it to take a picture of Trinity and get that sent of A.S.A.P!
Well anyways talk to ya all soon! Till Next Time!
Sincerely,
Chantel R. Conn
Thursday, November 6, 2008
Monday, November 3, 2008
Doing A Little Bit Better!
Hello there. Today has been a really good day. Other than the gray depressing sky and the rain. Trinity is doing good on her Ng feedings and only got sick 1x this morning. So that is a plus! Yesterday I did get some visitors, my twin Aunt came to visit for a little bit, and when I handed her Trinity she decided to try and get sick all over her. Then she had to go and then my parents showed up and stayed for awhile. Now my husband is up here along with my son visiting and she is smiling and having fun with her daddy!!! It is so cute! Well other than that there is no updates. Till Next Time!
Sincerely,
Chantel R. Conn
Sincerely,
Chantel R. Conn
Sunday, November 2, 2008
Letting Every One Know Terms That I Am Using On The Blog
Hello again friends and family. I wanted to let everyone know terms that I am using or could be using in the future and I know that majority of people are not in the field of being a nurse and or Dr so I wanted to get these terms defined for you so you are not wondering what they are. Ok 1) The Ng tube is called a Nasogastric tube and that is the one that is showed in the movie on this blog site. It is used to administer nutrition and medication from the nose to the stomach. This is what she currenly has now. 2)Is a PICC line. She is also using this. This is a central line that is a soft flexable thin tube that is inserted into the veins of the arm or in the inner thighs. The line is put in after a general or local anaesthetic. It is pretty much in a nut shell a long term I.V. It is used for her to draw her blood since she is getting weekly blood draws. 3) Is the PELD score. Peld scores are numerical scales that are currently used for liver allocation. Peld scores are based on a patients risk of dying, while waiting for a liver transplant and are based on objective and verifiable medical data. There are 2 diffrent names for them the Peld score is for children that are 12 years and younger, and the MELD scores are for kids that are over the age of 12 through adulthood. The Peld score is based solely on billirubin, INR , Albumin, growth faliure, and age when listed for transplant, factors which better predict mortality in children. These scores do not determine the likeihood of getting a transplant,which will be based upon organ availability and the distribution of Peld scores for paitents in a local area or region. 4) INR means International normalized ratio. It is a system established by the World Health Organization. Well that is all I have now if anyone has any more questions just e-mail me and I will find out. Till next time.
Sincerely,
Chantel R. Conn
Sincerely,
Chantel R. Conn
Getting Sicker by The Minute
Hello again friends and family. Sorry I haven't posted until now, lots been going on since last time. Between the bed changes and massive sponge baths during the day sometimes wonder how I keep going. Sissy is on Ng Tube feedings now constant and she is not taking them very well at all. She is getting sick all the time and I have no idea what to do for her. I just feel really bad for her and try and make her as comfortable as possible. I have talked with the Dr this morning and she said that try and keep her from flipping over on her stomach is all I can do. She has been cranky today with little grimaces and smiles once in awhile but she is really ticked of at her Mommy right now cause I won't let her go on her stomach. Wonder who she gets that from? Haaaa! Anyways right now we turned off the feedings to give her a break cause I think that she needs one and she has fluid in the belly yet again. Yes she looks like a pot belly pig again! Anyways other than that I have no updates.. oh ya I do the Dr's. talked with my Mom when she was up here spending the night and in the Morning and said that they are going to go over her PELD score again Tue or Wed of this week. Ok that is all I know off the top of my head. Well have to go. Till next time.
Sincerely, Love, God's Blessings
Chantel R. Conn
Sincerely, Love, God's Blessings
Chantel R. Conn
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