Today Kaelyn had what is called a Hide-a-scan (I am pretty sure that is not how it is spelled, but that is how it sounds). This scan uses radioactive liquid that is injected into the broviac line and is traced through the body with a camera. It took almost two hours to complete. Kaelyn did a pretty good job with it and even fell asleep about the last 10 minutes. The results were good, no leakage that could be seen. Tomorrow they are going to run a shorter version of the test to make sure there is no remaining radioactive particles in her system. If they find some it could mean that there is a small leak. But today's scan points to no leak. Yeah! So, they reason for the green drainage could be that it is an old hematoma that is only now being drained. I guess blood can turn a bile "ish" green color when it gets old.
We talked a little bit about when we get to take Kaelyn home today. It will probably be two more weeks. Her weaning off of the narcotics will most likely take that long to complete. She has just been on them too long to go any quicker.
Jacob is doing okay with all of this. He came to visit us in the hospital yesterday and I think we had a pretty good time. Right when he was leaving though, he asked me when he was going to see me again. That just about broke my heart. No 6 year old should have to worry about the next time he can see his mom, especially in a happily married, functioning family. That is one part of this whole experience that still makes my heart hurt. How is this going to affect Jacob. Though he has been quite brave and non-angry about the whole thing. He is such a special kid.
Once again, I put my trust in the Lord and pray that all will be well.
Angie
Monday, September 25, 2006
Sunday, September 24, 2006
Making progress...
Kaelyn seems to slowly be getting better. This morning she woke up and was playing and scooting all over her bed. An hour later though she was worn out and is now taking a mid-morning nap. It was fun to see her want to play so much! Her tummy is still kindof of full looking, like there may be some fluid collecting in her abdomen. The drainage out of her drain looks green. They tested it for bilirubin yesteday and it does have a fair amount in it. So there may be some sort of leakage of bile somewhere. Tomorrow Dr. Healey will probably make a suggestion on what, if anything, we need to do about it. Atleast she is not fevering and in too much pain. We actually are starting to wean her again off of her narcotics. That is another good sign that things are moving in the right direction.
Love,
Angie
Love,
Angie
Thursday, September 21, 2006
Out of surgery, in ICU out of ICU...
Busy couple of days!
It has been really hard to get to the computer. And it seems when I finally have time to go update, so does every other parent in the hospital.
Kaelyn came out of surgery yesterday around 2 pm. Dr. Healey evacuated a lot of fluid from her abdomen, including a pocket that looked like it had bile in it. He hopes that area stays dry, if it begins to fill again she might have some sort of leak in her common bile duct. He also cleaned out the blood clots in her abdomen. He could not see any active bleeding, which is good. He closed her muscle layer and let only the skin and fatty tissue layer open. So she is just about fully closed. She only has about an inch wide would, but it stretches across her whole belly. I think she will feel much better with her muscle layer closed.
She was transfered to the ICU after surgery just to watch her overnight to be cautious. She was in a lot of pain and the ICU resident on last night would not increase her morphine drips, he was afraid of compromising her airway. It was a long night. But this morning after rounds her transplant team was a little upset that the ICU folks let her go through so much last night and quickly increased her drips. She felt better after a few hours on the higher does and is resting comfortably right now. We are currently back on the surgical unit out of the noisy ICU (yeah!).
Dr. Healey took her off of her heparine drip two nights ago in preperation for surgery yesterday. So far she is doing well off of it and has not had anymore problems with bleeding (Dr. Healey believes that is why she was bleeing, the heparine). She has had two ultrasound since surgery and her Hepatic arteries Right and left has some flow. So that is good, off heparine with flow. Healey is going to keep her off of her heparine for now since things look okay in there. He believes that as soon as the post-op swelling goes down that we should see even better flow.
She is going to get a blood transusion tonight, her hematocrit is down to 22. So that should help her feel better. And hopefully tomorrow after a good night's rest with the right dose of pain meds she should feel much better.
Love,
Angie
It has been really hard to get to the computer. And it seems when I finally have time to go update, so does every other parent in the hospital.
Kaelyn came out of surgery yesterday around 2 pm. Dr. Healey evacuated a lot of fluid from her abdomen, including a pocket that looked like it had bile in it. He hopes that area stays dry, if it begins to fill again she might have some sort of leak in her common bile duct. He also cleaned out the blood clots in her abdomen. He could not see any active bleeding, which is good. He closed her muscle layer and let only the skin and fatty tissue layer open. So she is just about fully closed. She only has about an inch wide would, but it stretches across her whole belly. I think she will feel much better with her muscle layer closed.
She was transfered to the ICU after surgery just to watch her overnight to be cautious. She was in a lot of pain and the ICU resident on last night would not increase her morphine drips, he was afraid of compromising her airway. It was a long night. But this morning after rounds her transplant team was a little upset that the ICU folks let her go through so much last night and quickly increased her drips. She felt better after a few hours on the higher does and is resting comfortably right now. We are currently back on the surgical unit out of the noisy ICU (yeah!).
Dr. Healey took her off of her heparine drip two nights ago in preperation for surgery yesterday. So far she is doing well off of it and has not had anymore problems with bleeding (Dr. Healey believes that is why she was bleeing, the heparine). She has had two ultrasound since surgery and her Hepatic arteries Right and left has some flow. So that is good, off heparine with flow. Healey is going to keep her off of her heparine for now since things look okay in there. He believes that as soon as the post-op swelling goes down that we should see even better flow.
She is going to get a blood transusion tonight, her hematocrit is down to 22. So that should help her feel better. And hopefully tomorrow after a good night's rest with the right dose of pain meds she should feel much better.
Love,
Angie
Tuesday, September 19, 2006
Back to surgery tomorrow
Kaelyn needs to go back into surgery tomorrow. She is having some bleeding and her patch that is covering her wound is not holding. Her abdomen in more distended today, probably from excess fluid and the liver being enlarged. So the patch is being stretched past its limit and is starting to open a little. So Dr. Healey will take her back in tomorrow to investigate where the bleeding is coming from and clean up any fluid pockets he can find. One good thing is that they will be able to close her, or atleast close her a little more.
Yesterday was quite an eventful day. She had her ultrasound in the morning and we discovered that the flow in her arteries was much less, if not even unmeasurable. So later that day they took her in for a CT scan to see if they could find the flow. Thank heavens they did, the right side is still blocked but the left side was showing flow. Dr. Healey is still concerned that it has slowed down though because the ultrasound could not pick it up. Where the last few they have been able to find it right away. So, unfortunately we are back in the waiting game to see what will be the results of slowed arterial flow. Dr. Healey speculated a few different scenarios: One, it could be total Deja Vu from the last liver (not wanted). Two,we could have one good side with working bile ducts and one bad side that would eventually be resected but leave a healthy working liver (better choice than one). Or three, optimistically all could resolve and the bile ducts could be healthy and well and everything working good (best choice, but least likely). So we wait to see what the liver will do.
Hopefully all will go well in surgery tomorrow and she comes back completely closed. She would be so much more comfortable. Even though she is sitting up in bed and playing with toys. It would be great to have her running. One thing I have learned (at least tried) is patience. And the knowlege that God is there every step of the way.
Love,
Angie
Yesterday was quite an eventful day. She had her ultrasound in the morning and we discovered that the flow in her arteries was much less, if not even unmeasurable. So later that day they took her in for a CT scan to see if they could find the flow. Thank heavens they did, the right side is still blocked but the left side was showing flow. Dr. Healey is still concerned that it has slowed down though because the ultrasound could not pick it up. Where the last few they have been able to find it right away. So, unfortunately we are back in the waiting game to see what will be the results of slowed arterial flow. Dr. Healey speculated a few different scenarios: One, it could be total Deja Vu from the last liver (not wanted). Two,we could have one good side with working bile ducts and one bad side that would eventually be resected but leave a healthy working liver (better choice than one). Or three, optimistically all could resolve and the bile ducts could be healthy and well and everything working good (best choice, but least likely). So we wait to see what the liver will do.
Hopefully all will go well in surgery tomorrow and she comes back completely closed. She would be so much more comfortable. Even though she is sitting up in bed and playing with toys. It would be great to have her running. One thing I have learned (at least tried) is patience. And the knowlege that God is there every step of the way.
Love,
Angie
Sunday, September 17, 2006
More awake...
Kaelyn was more awake yesterday. She was up watching Scooby Doo with Jacob and other cartoons. She did take a nice long nap, which seemed to help her feel a little better. I went home and slept last night, it's my last night at home for a while. Wade is going back to work tomorrow.
Wade said that Kaelyn was up a lot last night due to a tummy ache. They gave her some Zofran (anti-nausea med) and some benadryl. I guess that helped a little. We need to find out why she is feeling sick. Could be due to the fact that she has had nothing in her tummy for two weeks and now we are putting formula in through her NG tube. We did start it out very slow though and only gradually increased it through the past day and a half. Maybe they just need to cut back on the volume for a little while.
Well, I am off to the hospital. Thank you all for your prayers, notes and phone calls. It is really good to hear from you and know that so many prayers are being offered in Kaelyn's behalf. I know that Heavenly Father listens to them all.
Love,
Angie
Wade said that Kaelyn was up a lot last night due to a tummy ache. They gave her some Zofran (anti-nausea med) and some benadryl. I guess that helped a little. We need to find out why she is feeling sick. Could be due to the fact that she has had nothing in her tummy for two weeks and now we are putting formula in through her NG tube. We did start it out very slow though and only gradually increased it through the past day and a half. Maybe they just need to cut back on the volume for a little while.
Well, I am off to the hospital. Thank you all for your prayers, notes and phone calls. It is really good to hear from you and know that so many prayers are being offered in Kaelyn's behalf. I know that Heavenly Father listens to them all.
Love,
Angie
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