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
Thursday, September 21, 2006
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
Friday, September 15, 2006
Out of the ICU!
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
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
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
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