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
Wednesday, October 20, 2004
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
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
Tuesday, October 19, 2004
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
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
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
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
Monday, October 18, 2004
Kaelyn out of surgery
Kaelyn came out of surgery at 7 PM. They found a blood clot in her hepatic artery. The surgeon was able to clear it out and have blood flowing through the artery. They are going to keep her on her blood thinners in order to prevent any further clotting. Hopefully it will not cause too much bleeding. That is why they stopped her blood thinners the first time. It is such a delicate balance that we are trying to achieve. We are going to perform more ultrasounds in order to see the blood flow in the artery.
If in fact she does develope another clot, the surgeon believes that another surgery would be too risky. Because the liver is starting to function normally, he thinks that there may be a chance that the clot could clear on its own. If not, their is risk of infection and damage to the bile ducts within the liver. If this occurs it would be necessary for another liver transplant. We are praying that there will be no more blood clots and that the blood flow in the artery will be normal.
Kaelyn still is doing pretty well despite all of the surgeries. She is such a strong little thing.
~Angie
If in fact she does develope another clot, the surgeon believes that another surgery would be too risky. Because the liver is starting to function normally, he thinks that there may be a chance that the clot could clear on its own. If not, their is risk of infection and damage to the bile ducts within the liver. If this occurs it would be necessary for another liver transplant. We are praying that there will be no more blood clots and that the blood flow in the artery will be normal.
Kaelyn still is doing pretty well despite all of the surgeries. She is such a strong little thing.
~Angie
Surgery # 3
Kaelyn was wheeled into surgery at 2:30 PM. She was doing really well. All of her blood work was looking great and her liver function is good. So, the surgeons are guessing that the artery is not flowing because of spasms or a blood clot. We should hear an update by about 4 PM and then we will update the site.
Kaelyn goes back into surgery...
Well this morning they did an ultra sound on Kaelyn and found that the blood flow through the main artery is non-existant. They need to go back in to do some exploritory surgery to see why there is no blood flow. She is scheduled to go in today around 1PM. The surgery will most likley take 4 hours or so. We are anxious to see this part of the transplant over and behind us. We will post more as we know more.
Sunday, October 17, 2004
Breathing tube out...
They removed Kaelyn's breathing tube at about 5 PM today. She is breathing on her own and doing pretty well. She did need a blood transfusion this evening her hematocrit was at 17, which is very low. She is having a little excess drainage from her site that is causing her hematocrit to drop a bit. The surgeons are going to take a look at that, but they believe it is probably just from the blood thinners that she is on. It will take them a little bit to discover the perfect balance of the thinners to put her on.
Other than those minor things, she is doing very well. The nurses keep commenting on how well she is doing in comparison to other liver transplant patients, so that is keeping our spirits up.
I will write later.
Other than those minor things, she is doing very well. The nurses keep commenting on how well she is doing in comparison to other liver transplant patients, so that is keeping our spirits up.
I will write later.
Kaelyn
Wade and I went to see Kaelyn this morning. She is doing remarkably well. All of her counts are heading in the right direction. The nurse said that she is very fiesty and strong willed. She said that Kaelyn woke up this morning and acted like she was done with all this mess and was ready to walk on out the door! Unfortunately, we can't have her moving around that much, so they had to sedate her (the nurse said it took quite a bit of medicine, because she was fighting it so much). All of the doctors and nurses say that in their experience that the fiesty ones recover much quicker. The nurse said that her liver function was doing very well.
They do need to bring her Hematocrit (red blood cell) count down. It is at 50 right now and they want it to be around 35. A higher concentration of red blood cells means the blood is thicker and more viscous which creates a higher chance of clots. So they are going to remove some blood and replace it with Albumin, which is a plasma derivitive without the platelets (clotting factor). They also are going to try and remove her breathing tube later on today.
She is doing so good. Heavenly Father is surely looking out for our girl. We have realized so many blessings in the past 24 hours. Thank you all for your prayers and support. We will definitely keep this site updated as often as possible.
Angie
They do need to bring her Hematocrit (red blood cell) count down. It is at 50 right now and they want it to be around 35. A higher concentration of red blood cells means the blood is thicker and more viscous which creates a higher chance of clots. So they are going to remove some blood and replace it with Albumin, which is a plasma derivitive without the platelets (clotting factor). They also are going to try and remove her breathing tube later on today.
She is doing so good. Heavenly Father is surely looking out for our girl. We have realized so many blessings in the past 24 hours. Thank you all for your prayers and support. We will definitely keep this site updated as often as possible.
Angie
Out of surgery, again...
Kaelyn came out of surgery for the second time at about 3:00 AM this morning. Dr. Healey, the surgeon, said that all went very well. Kaelyn did wonderful, and her blood flow is looking a lot better. They rerouted the main artery because there was a blood clot in the main portal vein from the first surgery. He said that everything looked fine though after the second surgery. She is on some blood thinners, just in case.
Surgery Update
Kaelyn was out of surgery by 8:30 PM tonight. We were all very suprised to have it be finished so quickly. The surgeon said that she did great. The tumor was huge, but it looks like he was able to remove it all. The new liver went in very smoothly and actually looked like it was beginning to function.
We were soon settling into bed when we received a page from the ICU at about 11:00 PM. We were informed that Kaelyn needed to go back into surgery. Her main portal vein was not showing good enough blood flow. So they needed to go back in and reconstruct and redirect the vein to the main portal artery. She is still in surgery right now, it is about 1:30 AM on Sunday. We have received an update from the OR and she is doing fine. We don't know how much longer she will be in surgery. I will write again after she comes out.
We were soon settling into bed when we received a page from the ICU at about 11:00 PM. We were informed that Kaelyn needed to go back into surgery. Her main portal vein was not showing good enough blood flow. So they needed to go back in and reconstruct and redirect the vein to the main portal artery. She is still in surgery right now, it is about 1:30 AM on Sunday. We have received an update from the OR and she is doing fine. We don't know how much longer she will be in surgery. I will write again after she comes out.
Subscribe to:
Posts (Atom)