Good news, Kaelyn was transferred out of the ICU today! She is now on the surgical unit, where we usually stay. Amazingly, her nurse is the same (Annie, one of our favorites) as when she had her first transplant and was transferred out of the ICU. Coincidence? I love it!
Kaelyn is still not feeling too well. She has been very sleepy today. One of her cultures from her breathing tube, pre-extubation, has grown a little bacteria. So we are starting her on yet another antibiotic. So hopefully that will help her feel a lot better.
Her ultrasound looked really well today. Her right HA (Hepatic artery) is still blocked with no flow, but her left HA looks even better. I guess it was a little sluggish before, today it looks as if it is flowing with no problems. Yeah herparine! She does still have a lot of gas in her intestines that may have leaked a little into her bile ducts. Since her common bile duct is attached directly to her intestines some air may have been forced in. But the docs say that this is not harmful to the liver, it will just work itself out.
Kaelyn is also going to have a NG tube (feeding tube, through the nose into her stomach) placed. She just doesn't feel like eating and she needs to take in about 1300 calories a day. I talked with her about it and she said she would rather have the tube than try and eat right now, precious girl. She too wise for her 3 years...
So, I am looking forward to a little less commotion in our room tonight - and hopefully a little better sleep.
Angie
Friday, September 15, 2006
Extubated!!!
Yeah! Kaelyn was finally extubated on Wednesday. That is why I haven't had a chance to post any new updates. She really needed me wednesday and that night she hardly got any sleep so I was not good for anything yesterday. So, this morning after a full nights rest (Wade stayed the night with her while I came home) I am finally updating the site. I apologize for missing two eventful days.
She still could not talk much, so it was frustrating for her not to be able to get her point across. Yesterday so could get out a few more words, so hopefully today she will be able to talk more. We need to get her to start eating. I guess at 4 am the nurses tried to put an NG tube down her nose (why they thought 4 am was a good time puzzles me, especially since she was sleeping) but Wade put a stop to that. They haven't even let her try to eat on her own yet. Urrr...that makes me upset. So thankfully Wade protectively said we need to let her try first. I think they are going to give her today to try...I know we can get her to eat, she absolutely hates NG tubes.
We might be transferring to the regular floor today, yeah! Better sleep for all!
They started doing ultrasound every other day, so yesterday was our first day without one. It makes me a little nervous, but there really has been no change in about a week. So, it makes sense.
Today should be a good day. It has been so fun having our Kaelyn back. She is laughing and trying to play and sing (with no voice, it's pretty cute!). And she also has been loving to try and blow bubbles (little does she know that it is therapy for her lungs!).
Love to all,
Angie
She still could not talk much, so it was frustrating for her not to be able to get her point across. Yesterday so could get out a few more words, so hopefully today she will be able to talk more. We need to get her to start eating. I guess at 4 am the nurses tried to put an NG tube down her nose (why they thought 4 am was a good time puzzles me, especially since she was sleeping) but Wade put a stop to that. They haven't even let her try to eat on her own yet. Urrr...that makes me upset. So thankfully Wade protectively said we need to let her try first. I think they are going to give her today to try...I know we can get her to eat, she absolutely hates NG tubes.
We might be transferring to the regular floor today, yeah! Better sleep for all!
They started doing ultrasound every other day, so yesterday was our first day without one. It makes me a little nervous, but there really has been no change in about a week. So, it makes sense.
Today should be a good day. It has been so fun having our Kaelyn back. She is laughing and trying to play and sing (with no voice, it's pretty cute!). And she also has been loving to try and blow bubbles (little does she know that it is therapy for her lungs!).
Love to all,
Angie
Tuesday, September 12, 2006
Clarification...
Okay, so when Dr. Healey came in today to talk to Wade and I about the situation we both felt a whole lot better. He explained that the artery splits into two different branches once inside the liver. Right now the left branch of the Hepatic artery is flowing nicely, while the right has no visible flow. Because the thrombosis is in the interior of the liver he cannot go in and revise it. He also does not believe that putting in any TPA (mega-heparine) would do any good because it would all follow the left branch where there is no blockage. So really, surgery would not be in Kaelyn's best interest. Dr. Healey said that there is a chance that the heparine she is currently one could unclog the artery, given time. So we will just watch and see. He also said that it is a very good thing that one branch of the hepatic artery is flowing. She could have a very good, if not normal, life if that left lobe of the liver remains stable with good blood flow. If the right side never clears it would eventually shrink while the left side would grow to compensate. She would possibly have to have a resection of the bad lobe, but Dr. Healey said that is totally fixable.
There is hope!
Angie
There is hope!
Angie
Not going to OR
Dr Healey and Reyes have decided to not take Kaelyn back into the OR to try and clear the artery. They believe that the time for now is to just wait and see if the flow will return. This is extremely frustrating, though I know that they really cannot do much about it. I kindof glazed out the rest of rounds this morning. I think my brain just could not handle any more. So I am going to have a dr. come in and explain to Wade what was decided, because he really needs and wants to know everything that was said.
Kaelyn did have a fever all last night and her tummy was red and hot to the touch. So they sent off more cultures to see if she has an infection. She already has a yeast infection in her abdomen. So they broadened her antibiotic coverage to try and cover her for anything. All in all she is on 5 different antibiotics.
Her DNA testing will come back on Thursday to see if she has any kind of clotting disorder. Her Hemetologist (which coincidentally is the same as her Oncologist, Dr. Thomson) came in yesterday and mentioned that she thought that possibility of her have coagulation disorders is rare considering she had her port in for almost two years with no problems. So we will see.
I believe that it is all in Heavenly Fathers hands now. It has always been, but I am realizing that we have done all we can. Please continue in prayer for Kaelyn.
Angie
Kaelyn did have a fever all last night and her tummy was red and hot to the touch. So they sent off more cultures to see if she has an infection. She already has a yeast infection in her abdomen. So they broadened her antibiotic coverage to try and cover her for anything. All in all she is on 5 different antibiotics.
Her DNA testing will come back on Thursday to see if she has any kind of clotting disorder. Her Hemetologist (which coincidentally is the same as her Oncologist, Dr. Thomson) came in yesterday and mentioned that she thought that possibility of her have coagulation disorders is rare considering she had her port in for almost two years with no problems. So we will see.
I believe that it is all in Heavenly Fathers hands now. It has always been, but I am realizing that we have done all we can. Please continue in prayer for Kaelyn.
Angie
Monday, September 11, 2006
Clot...
Kaelyn came out of surgery last night around 8 pm. I spoke with Dr. Healey, he said that when he looked at her hepatic artery before trying to close her that he noticed the flow was very sluggish so he had ultrasound come in to the OR to take a look. By the time they got there the flow had stopped completely. So he did a complete revision of her hepatic artery. He took a portion of donor artery (the same donor that she received her liver from) and made a new connection. After he did this there was good blood flow. He almost closed her, leaving just a small portion of the abdomen open. He didn't want to put too much pressure on any of the organs by closing her all of the way. He suspects that she does in fact have a clotting disorder. So he is going to consult with the hematologists to see if they have any suggestions on keeping her arteries clear.
This morning ultrasound came in and found that it looked like the artery may be blocked once again. I have not heard what Dr. Healey would like to do. He really wants to give her time out of the OR to stablize, but with the likelihood of another clot I don't know what he will do. Last night when she came out of the OR she spiked a fever and her blood pressure dropped pretty dramatically. Her nurse said that it took a good chunk of the night to get her to stablize her pressures. But she is fine now, she does still have a fever. But that is not out of the ordinary for someone that has been in the OR so many times.
Please pray for Kaelyn...
Angie
This morning ultrasound came in and found that it looked like the artery may be blocked once again. I have not heard what Dr. Healey would like to do. He really wants to give her time out of the OR to stablize, but with the likelihood of another clot I don't know what he will do. Last night when she came out of the OR she spiked a fever and her blood pressure dropped pretty dramatically. Her nurse said that it took a good chunk of the night to get her to stablize her pressures. But she is fine now, she does still have a fever. But that is not out of the ordinary for someone that has been in the OR so many times.
Please pray for Kaelyn...
Angie
Sunday, September 10, 2006
Thrombosis, again...
Kaelyn went into surgery again today with the expectation of closing her tummy. Dr. Healey got in there and once again found a blood clot in her hepatic artery. So he has revised it. The last update I heard was that they were waiting for the ultrasound tech to come and make sure it was working. She has been in surgery for close to 7 hours.
They just don't know what to do to keep her from clotting. She is on her theraputic dose of heperine. It is a constant drip. She should not be clotting. They are running some tests to see if she has a clotting disorder, but those results will not be back for about 4 days. Even once we get the results back, I don't know what else they can do to prevent her from clotting. Maybe they have something a little more agressive than heperine. But we also don't want her to bleed either. Arhhhhh!
I will write later after I have had a chance to talk to Dr. Healey. Maybe he has some advice or insight.
Love,
Angie
They just don't know what to do to keep her from clotting. She is on her theraputic dose of heperine. It is a constant drip. She should not be clotting. They are running some tests to see if she has a clotting disorder, but those results will not be back for about 4 days. Even once we get the results back, I don't know what else they can do to prevent her from clotting. Maybe they have something a little more agressive than heperine. But we also don't want her to bleed either. Arhhhhh!
I will write later after I have had a chance to talk to Dr. Healey. Maybe he has some advice or insight.
Love,
Angie
Subscribe to:
Posts (Atom)