Pictures of Kaelyn...

Day of Great News!

Okay, we have gotten more good news today than in the past 5 months! Kaelyn's pathology report came back today. It looks like the cancer has not spread anywhere else in the body or blood stream and was totally contained in the liver. It was all taken out from what they can tell. We will check her AFP levels in a couple of weeks and also do a CT Scan, but from the information they have now our oncologist predicts that we will NOT NEED ANYMORE CHEMO!!!!!!!!!!!!!!!! We are so excited! I thought that for sure she was going to need 6 more weeks, but for right now she doesn't need anymore at all!

Also, her ultrasound this morning showed great improvement in the hepatic artery. Blood is flowing into twice as much of the artery than it was two days ago. It is still not reaching the liver, but it is very close. It is flowing up until the wall of the liver. This too is great news. We are hoping that in two more days that the flow will be completely normal again.

Kaelyn may also be released from the ICU in a day or two. She is doing so well. Her liver is functioning better and better each day.

I just can't hardly take in so much great news! It has been a beautiful day so far. Hopefully the trend will continue! We are so greatful to our Heavenly Father for the many blessings he has given to our little girl. What a gift she is.

Love,

Ang

I forgot to mention that Kaelyn got to see one of the therapy dogs a couple of days ago. His name was Sugar Bear. He was in the ICU making his "rounds" and stopped by. Kaelyn really liked him a lot. It was very cute how she just loved looking at him. She was sad when he had to go. It was a very good distraction for her.

Yesterday was an interesting day. The suction on Kaelyn's NG tube (stomach pump) had been turned up way to high. Wade actually was the one who noticed it. He kept seeing red and pink fluid being dropped into her container. He mentioned it to the nurse, who promptly turned down the suction. But in result of it being up to high she was having some bleeding in her tummy. They think the suction was stuck on her stomach wall causing it to bleed. They turned down her heparine (blood thinner) by half and gave her some prevacid (acid reducer). It did stop bleeding and they eventually were able to turn her heparine back up to it's regular level. We were a little concerned about all of this since her heparine is what will hopefully unclogg her hepatic artery. Another "mistake" happened also, one of the residents left her computer logged on and someone (?) discontinued some of Kaelyn's antibiotics. These antibiotics are what are keeping her white blood cell count down so she will not reject her new liver. Luckily we had a great nurse yesterday who caught the mistake early and got her meds reestablished. It was all very disconcerting to us to have these two "mistakes" happen in the care of our baby. These things should not happen, especially to someone in the ICU! But atleast they were both caught early so no permanent damage was caused. I know that Wade and I are going to be just that much more aware in everything that is being done to our daughter from now on. I know that mistakes are made, but I wish they just wouldn't happen to our girl.

Anyway. Enough of my complaining. All in all, she has gotten great care and things are still going pretty good. She will get another ultrasound today to see if we can find any more blood flow to her liver from her hepatic artery. Say a little prayer for that today. I will update as soon as I find out any further info.

Love to all,

Angie

Day 5

Not much has changed in Kaelyn's condition from yesterday. The surgeon has said that he did review yesterdays ultrasound. It doesn't look much different from the one that was performed right after her 3rd surgery. There is flow in the Hepatic artery but it is not reaching the liver. Dr. Healey said that there is a possibility that the blockage could clear on it's own, but it may not. If it doesn't clear on it's own there are a few options of what may happen. Some kids liver can handle no blood flow from the artery because it is getting blood from the portal vein. But there also may be a chance of infection or scaring in the bile ducts which would result in Kaelyn needing another liver transplant. So right now we just wait and see what her body does with all of this. Hopefully the blockage will clear and the liver will get all of the blood it needs. She will be getting an ultrasound every other day to check the artery for flow.

She is also having some high blood pressure issues. So we are starting to give her some blood pressure medicine to try and control that. She has been very restless most likely in result to the high blood pressure. Hopefully the medicine will help her feel a little better so she can get some sleep.

We finally get to let her have some things to drink. She had about three sips of juice today so far.

Keep praying for our girl. She is a strong little fighter.

~Ang

Day 4 in the ICU

Well, today Kaelyn has been very aware and awake. She is still needing quite a bit of pain meds to keep her calm and settled. I think that besides the pain, she just wants to get out of that bed. I might get to try and hold her tonight. That would be good for both of us.

She did finally have her ultrasound today. We have not heard the official results from the radiologist yet, but the ultrasound tech gave us a little idea of what she saw. She said that there is some flow in the hepatic artery, but not any visible flow getting to the liver itself. But that is more than they saw last night after surgery. So we are hoping the the blood thinners will continue to do thier job and free up that artery. She will continue to have ultrasounds often to monitor her blood flow.

We have had not much else go one today. I will update as soon as I can after we hear the official report from the radiologist.

Love,

Angie