My husband Jack is having stents put in today
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Bluebird, Teddy always had ‘external’ stents from the side. They give a twilight sleep, he never felt it, then they guide the stent in from the side. I know you are worried about your son, but know that children are stronger then you think and most of them want to feel a part and help if they can. We will talk more after. Good luck we are all cheering for the procedure.
Thank you all so much. We talked with the oncologist yesterday and are going to give it one last shot with the drainage procedure tomorrow. If that doesn’t work, he will sign off on the hospice and get that started. He said to go ahead and call them to set up a first meeting, so we will be ready to go when the time comes. I have heard great things about hospice. Lainy, I will e-mail you then for your suggestions. Thank you so much. I think the hardest thing is preparing our ten year old son for this.
Hi bluebird,
I am sorry I don’t know anything about stents and drains other than what I have read on this site. I hope whatever you and Jack decide makes him comfortable and pain free. I am sorry you both have to go through this hard time and I am praying for both of you.
Hugs and love, -Pam
Bluebird, I ditto what Marion said. I have talked to many on this site who did not want to call Hospice and after they did, they knew they did the right thing. Comfort is the bottom line. IF Jack decides he wants Hospice now, your ONC will set it up. They will come interview you and the next day you will have all you request. Should you decide to go that route please feel free to email me and I will tell you what I ordered for Teddy and why. You will be less afraid knowing they are visiting and doing what is necessary to keep Jack comfortable. I know very well what you are going through and my heart is with you and your family.
bluebird….if it were me, I would consider Hospice and leave all other options open i.e. drainage. Hospice will give you the help needed and most of all; your husband will be made comfortable. You know, dear bluebird, this disease has a way of moving us along in that we are confronted with having to make decisions unconceivable before all this began. But we are fortunate; we continue to set goals, small, but achievable. And, remember, dear bluebird, Hospice allows for comfort care. They won’t interfere with you and your family in any way.
My heart is with you,
Hugs,
MarionHello All,
The stent that was put in last Thursday is not working. His bilirubin went from 8 to 10. I just talked to the interventional radiologist who said the only thing he can offer is to try to decompress the left lobe from outside (surgicially with the bag for outside drainage), but he doesn’t think it will reduce his bilirubin below the 2.0 limit for further treatment options (radio embololization, chemo trial). Jack’s right lobe is completely filled with tumor, so they can’t do anything for that side. He wanted us to consider whether to have this procedure done, in light of everything. He was not optimistic. He told us to call him back later today with our decision. Personally, I want to go forward with it, because we have no other option. My husband is sleeping, so I will talk to him when he wakes up, and also talk to the chief oncologist. Jack has been groggy and not lucid since the stent was put in (he was getting forgetful the last two weeks), and he is so yellow from the jaundice. The doctor talked to us last week about hospice care. Should I be bringing them in now? I don’t know too much about it. I have been taking care of him and have family staying with us now to help out.
bluebirds….hang in there. This disease likes to throw curveballs. Stents works relatively quickly in reducing the accumulated bile in the liver. There is a good chance that your husband’s bilirubin will drop significantly within the next few days.
Hugs
MarionHi bluebird,
I hope Jack’s stents help with his bilirubin and he is able to have his radioembolization soon. All the best to both of you. Please let us know how he is doing.
-Pam
Hi Bluebird, I am sorry about the RE cancellation but the stents are a necessary thing to alleviate the Jaundice. Usually the Billie starts dropping once stented as the ducts will now be open for the bile to flow. I hope the RE can be done soon and these set backs are what we refer to as our roller coaster ride. Sending good vibes your way and BE STRONG! Please let us know how Jack is doing with the stents.
My husband Jack was scheduled for radio embolization yesterday, but he is jaundiced so he was unable to have the procedure done. He spent the night in the hospital and is having stents put in right now. If they work, the doctor said it could take 3 weeks for his bilirubin level to come down, before they can do anything else.
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