Today they took out the old biliary tube. It only took them about 15 minutes and she did not need any sedation. So far so good, no evidence of any bacteremia like last time. I was a little nervous when they took her to do the procedure, but all of the docs assured me that it would most likely not happen because she is on so many IV antibiotics. I think she will be fine. It will be nice not having two drains to worry about. Tomorrow I think we will clamp off the external part of the new drain and see if it will just drain exclusively internally. That is the goal. If it works, we won't need to have the big bag hanging off of her any more. Even though she does look awfully cute carrying it around in her cure little Hello Kitty pink backpack!
Well, the meeting with all of the docs yesterday went well. I think we cleared up a bunch of our questions. The liver is in good shape to handle the chemo, we really shouldn't have any problems with the livers function. And we decided for sure to start the Irinotecan chemotherapy on the 11th of April. It will be pretty intense, more than I thought. She will be on for 5 days, have two days off, on for 5 more days and then have two weeks off. We will go through 2 courses of this and then rescan and check her AFP. If her tumors look responsive to the treatment we will continue, if they are not, we will reconsider treatment. There are other chemos we can try, but they produce much worse side effects and require a whole lot more time in the hospital. But we will just pray that the Irinotecan works.
We are thinking we will go to Disneyland the first week in April. That will be so fun for us all I think! We are all very excited. It will be good to enjoy our children well and happy together.
Love to all,
Angie
Wednesday, March 16, 2005
Tuesday, March 15, 2005
Out of the ICU!
Kaelyn was transferred out of the ICU yesterday about 3:30pm. We are now back on the surgical unit in a much quieter environment. She is resting comfortably and all of her vitals are stable and well. She is on a whole lot of drugs so she is very sleepy. We are weaning her off of the sedation and IV pain meds today, so hopefully tomorrow she will be more lively and herself.
We are clamping off the old drain to see if the new drain is working properly. If it is, I think they will take out the old drain tomorrow. The docs all assure me that there is little chance of her going into septic shock again from this procedure because she is on three different IV antibiotics. I must admit that I am a little nervous about them going in there again. But I also trust Dr. Healey and I know that he knows what he is doing. Taking the drain out is very simple, they will do it in her room, so really it should be fine.
This afternoon we are meeting with both the oncology people and the liver people together. I am very excited about this, so we can get things straight on her treatment and the effects on the liver. So, I will let you know the outcome of that meeting soon.
Love you,
Angie
We are clamping off the old drain to see if the new drain is working properly. If it is, I think they will take out the old drain tomorrow. The docs all assure me that there is little chance of her going into septic shock again from this procedure because she is on three different IV antibiotics. I must admit that I am a little nervous about them going in there again. But I also trust Dr. Healey and I know that he knows what he is doing. Taking the drain out is very simple, they will do it in her room, so really it should be fine.
This afternoon we are meeting with both the oncology people and the liver people together. I am very excited about this, so we can get things straight on her treatment and the effects on the liver. So, I will let you know the outcome of that meeting soon.
Love you,
Angie
Sunday, March 13, 2005
Day 4 in the ICU
Kaelyn is doing much better today. We think that she will be able to be extubated (breathing tube taken out) today. They have just about weaned her completely off of her blood pressure medicine and she hasn't had a fever in a couple of days. It will be so good to be able to have her talk and be awake again. They have had to keep her pretty well sedated while the tube has been in.
She will probably stay in the ICU 1 or 2 more days for observation, to make sure she is stable. Then we will be transfered back to the surgical unit for a few more days. Hopefully by the end of next week we will be able to go home.
After Kaelyn has had some time to recover, we have decided that we are going to take a short family trip to Disneyland! We are getting very excited, Jacob especially. The hospital has very generously offered to pay for some of our expenses like park tickets and our hotel stay. We were pretty shocked when our social worker came in and gave us that news! We are very thankful.
And then, when we get back, we will start Kaelyn's chemotherapy.
Kaelyn's has definitely been blessed with angels surrounding her these past few days. I think the reason she is getting better is that everyone acted so quickly, and I believe that we were all prompted to do so by our loving Father in Heaven. He is watching over us and know of Kaelyn's suffering, and I know that He is blessing her and our family.
Love to all,
Angie
She will probably stay in the ICU 1 or 2 more days for observation, to make sure she is stable. Then we will be transfered back to the surgical unit for a few more days. Hopefully by the end of next week we will be able to go home.
After Kaelyn has had some time to recover, we have decided that we are going to take a short family trip to Disneyland! We are getting very excited, Jacob especially. The hospital has very generously offered to pay for some of our expenses like park tickets and our hotel stay. We were pretty shocked when our social worker came in and gave us that news! We are very thankful.
And then, when we get back, we will start Kaelyn's chemotherapy.
Kaelyn's has definitely been blessed with angels surrounding her these past few days. I think the reason she is getting better is that everyone acted so quickly, and I believe that we were all prompted to do so by our loving Father in Heaven. He is watching over us and know of Kaelyn's suffering, and I know that He is blessing her and our family.
Love to all,
Angie
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