Kaelyn is 6!

Today is Kaelyn's 6th birthday! She is so excited. She came into my room this morning at 6:30 am and asked if it was her "real" birthday. When I said yes, she jumped for joy saying now I am really 6 years old! I can't believe that my little baby girl is really 6. It is miraculously amazing! 5 years ago on this date we were told she only had a 30% chance of surviving to her second birthday. Look where we are today! I thank God every day for that girl and her spunk. What a wonderful day for a party!

As far as liver issues go, she is doing great. Her labs are beautifully normal. She went back to school today and had a wonderful time. She doesn't even seem to be a bit tired. That may be due to birthday adrenaline, but I will take it!

Lots of love to you all,

Angie

Home Sweet Home

Kaelyn was able to come home last night. She is on IV Antibiotics with a PICC line in her arm. Home is as good of a medicine as anything, I think. She has been walking around playing her Age of Empires and dressing up our cat, Mickey-Belle. I think she is very happy to be home. She also slept very well. Nothing like home.

She continues to get better and better. She should be able to go back to school within a few weeks. She really misses her teacher and friends there.

I am so happy to have her and I home. Hopefully this surgery will be the fix that works long term.

Lots of love to everyone,

Angie

Much Better

We figured out a good regimen of pain meds for Kaelyn and she is doing much better today. She is up and walking a little bit and also playing and smiling some. Right now she is playing Candy Land with Jacob. He is such a good big brother. I am amazed by him. Kaelyn is finally starting to look like herself again. We are getting some of the excess fluid off of her and she is back to her rosy pink self. It sounds like if we can get her electrolyte balance and IV antibiotic dose more in control than we may get to go home tomorrow! Very exciting!

Thanks for all of your prayers and help throughout these past few weeks. We take one day at a time, but without Him, even that can be too much to handle.

Hunger partially satiated

They did let Kaelyn start on clear liquids yesterday. I had the surgeons paged twice in order to get them to make their decision and put the orders in the computer. They said at 7:15 am that they would make the decision, but it didn't actually happen until around 11. A 5 year old does not understand that the doctors said yes you can eat, but you have to wait until they put "orders" in the computer. It was a rough 4 hours. She still wants more then just broth and jello though. She keeps asking why she can't have noodles in her soup. Hopefully today they can advance her to atleast a full liquid diet. Then she could have malt-o-meal and yogurt.

They also took her off of her epidural last night. Wade spent the night with her and he said it was miserable. They put her on an oral pain med. This made her belly hurt, since all she has in her tummy is liquids (I am very upset they did this, you would think dr's should think about those things...grrr). She also is having some pretty bad gas pains that I guess the epidural was masking. The pain service needs to do something more for her. Wade had them paged around 4 times last night, but it sounds like they really didn't do much. They actually made her get out of bed and try to walk around 3 am! She hasn't been able to sit up let alone stand!!!! I am very upset. When I get in there today, there will be some heads rolling. I am usually a very calm, quiet person. But this day is the day my inner banshee comes out. What were they thinking?!!

On the flip side, today is the Pinewood Derby for Jacob. So he is going to go race his car that he and Wade made. I have to put on a happy face for now. Jacob deserves that. He really is a superhero alongside Kaelyn.

Hungry

Kaelyn is hungry. And the docs do not want her to eat yet. She tells me everytime she opens her eyes that she is starving and that the mean doctors haven't let her eat for four days. She is breaking my heart. The docs have good reasons for what they do, but I don't think they have spent any amount of time with a 5 year old that hasn't eaten in four days. It is stressful and extremely hard. The surgeons say that since this was such a extensive surgery involving the intestines they want her to take it slow with the eating. Hopefully tomorrow they will let her start with clear liquids. I almost wish she was sedated so she didn't have to go through this hardship. Poor little thing. She is also very swollen, her cells are really leaky causing her to be puffy everywhere. This is also very uncomfortable. I tried to get them to give her some lasiks to help dry her up, but they don't think it would help at this point. Maybe in a couple of days. Kaelyn is getting very tired of people telling her that she will be able to eat tomorrow. Tomorrow is a very long time for a five year old.

At least she is starting to be more awake and not in so much pain from her incision. I guess we have to take the pluses as they come. More tomorrow...