The doctors seem to think that Kaelyn will be ready to go home by Monday! Isn't that amazing. I was expecting her to be in the hospital for atleast 3 weeks or more. I am just so happy that she is doing so well.
We did have another ultrasound on Wednesday. There has been no change in the blood flow from her hepatic artery to her new liver. But so far all of her liver functions test have come back normal. So we are just going to wait and see what happens.
Right now I am just in the learning process of how to take care of her once we get home. A lot of drug information and precautionary information. It looks like we will need to become pharmacists along with nurses. It actually is pretty interesting, keeping my brain working at least.
Everything is going just great. THank you all for your prayers and concern.
Love ya,
Angie
Friday, October 29, 2004
Tuesday, October 26, 2004
Out of ICU!
Hello everyone!
I apologize for not updating the site recently. It was hard to get to a computer this weekend.
Kaelyn was finally transferred out of the ICU last night. We are now in the surgical inpatient unit. We have our own room which is really nice. Kaelyn did have another ultrasound yesterday. It doesn't look like there is too much change. But the surgeons are very optimistic because of her liver function tests. They are all coming back in the normal range, so that could mean that her liver can function without the blood supply from the artery or that they are just not able to see the blood flow from the ultrasound because the artery is so small. So, we are going to remain at the hospital for atleast another week to two weeks so they can keep her on her blood thinner and also keep performing the ultrasound. Otherwise all is great.
The surgeon said that this type of artery failure or blockage only occurs in 10% of transplant patients, of course our Kaelyn couldn't miss out on being part of the minority! :) But he also said he is very optimistic that they will be able to see the blood flow into the liver.
Kaelyn is really looking and doing very well. It is going to be great to be out of the ICU. She has been wanting to go for a walk since her transplant!
Love to all.
Angie
I apologize for not updating the site recently. It was hard to get to a computer this weekend.
Kaelyn was finally transferred out of the ICU last night. We are now in the surgical inpatient unit. We have our own room which is really nice. Kaelyn did have another ultrasound yesterday. It doesn't look like there is too much change. But the surgeons are very optimistic because of her liver function tests. They are all coming back in the normal range, so that could mean that her liver can function without the blood supply from the artery or that they are just not able to see the blood flow from the ultrasound because the artery is so small. So, we are going to remain at the hospital for atleast another week to two weeks so they can keep her on her blood thinner and also keep performing the ultrasound. Otherwise all is great.
The surgeon said that this type of artery failure or blockage only occurs in 10% of transplant patients, of course our Kaelyn couldn't miss out on being part of the minority! :) But he also said he is very optimistic that they will be able to see the blood flow into the liver.
Kaelyn is really looking and doing very well. It is going to be great to be out of the ICU. She has been wanting to go for a walk since her transplant!
Love to all.
Angie
Friday, October 22, 2004
Thursday, October 21, 2004
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
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
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
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