"Christi and I left at 9:10 a.m. on Wednesday to go to the Heart and Lung Center for her appointment with Dr. Harker. We checked in as usual and they beeped us through some locked doors into a private room. We met Kory, her male nurse and we let him know all that had been happening and asked him what exactly was going to happen today. We were disappointed as we were told they were just replacing the stent. We all thought Dr. Batista would be here and there would be a procedure with both Dr.s working on getting the stones out. Or at least they would decide which doctor had the better chance. We had gotten used to the idea that Dr. Batista was out of town so that wasn't happening, but we really were hoping Dr. Harker would work on getting the stones out. We have been told every permutation of that idea by every different person! Kory was nice and went to find out what exactly was happening and made sure we would get to at least talk to Dr. Harker before Christi was sedated. They took her blood pressure, put in an IV (somewhat uncomfortable this time Christi said) and she laid in bed in her hospital gown and brown hospital socks (which she informed me are the smaller size!).

Christi shed a few tears from just feeling so overwhelmed with it all. She told me she just couldn't think of anything anymore--it was just so frustrating. She's held up so remarkably well and not complained about anything other than not knowing what was happening and the what if's and why's! I finally turned on the TV at 12:00 and we were beginning to watch NCIS when the orderly came to take her downstairs for the procedure. They allowed me to come with her and told me I'd have to come back up to the room after the Doctor spoke with us. It is sort of shame we have to do this today because just yesterday she started feeling better and was holding down her fluids and food. Not sure what will happen to her after today.

Dr. Harker is a short, blonde lady that looks to be about my age. She's direct, to the point, and smart. You can tell and Christi was right. She started by explaining what she was planning on doing today and spent about 20 minutes talking with us. I finally put away the yellow pad full of Christi's handwritten questions because I thought she'd probably spent enough time talking with us and she said, "Questions? Let's see them." She told us the following:

She was going in today after giving it a few weeks to calm down to see if first of all, she could see any stones, and secondly, if she might be able to coax them out of the bile duct. The ampulla (the base of the duct) was closed down tight for some reason so that was why it was important to get the stent/catheter in to allow the bile to drain and for things to calm down. She reminded Christi that she had told her this stent might be in for some time and that they wouldn't want to pull it out--even if today they found the stones and were able to push them into the duodenum because there might be more stones up in the duct that they couldn't see and they wanted to give it a week or two to flush those out if they were able to get them past the ampulla.

She said they "might" cap the catheter today and if they did they would give us supplies and instructions on how to deal with it at home. Flushing, watching for infection.

She made a big point that we should have the antibiotic prescription filled and that at the first sign of fever we should uncap the catheter, replace the bag, take the antibiotic and call her office in the morning. The only reason to go to the ER would be for significant pain, and unusual symptoms.

She was hoping to use a balloon technique to enlarge the ampulla and allow the stones and bile to pass through if possible.

They would sedate Christi and they have already given her a dose of antibiotics so there shouldn't be any problems with the bacteria, etc. causing an infection.

She asked for my number so she could call me since Christi won't be fully aware after the anesthesia to tell me if they found any stones and if they were successful in getting them out.

She told us the difference in bile output could be due to a lot of variables. Gravity, lying down, sometimes the drain isn't working as well and you might feel a little sick (Christi shook her head in agreement).

She made it clear that we need an internist or primary care doctor to coordinate all that was and is going on. She said Rassmussen has never talked with her. The chain of events was:

Rasmussen suspected stones in the bile duct and was right to leave them alone; he called Batista which was the right thing;
Batista attempted the ERCP which was the right move, but when he failed, he called Dr. Harker.

She will speak with Dr. Batista if she discovers stones and is unable to get them out and they will set up the rendevous procedure where he will come in endoscopically and attach to her catheter which she will pull out and that way he enters the duct and is able to hopefully grab the stones and get them out.

She made it REAL CLEAR that if that doesn't work, we would only want a BILE DUCT SURGEON to operate on the bile duct. She said she wouldn't let anyone else touch it. And that it is the LAST RESORT. You don't mess around with the bile duct--too many possible complications and problems and we got the impression that it doesn't usually go well. She also let us know that Rasmussen is basically done and that he's done the right thing since he was the admitting doctor, but it's really not the surgeon's place to continue following the case.

She reminded Christi that she had explained to her earlier that the stent would be in for at least a couple of weeks if not more. She made a comment that stents are put in place for lots of reasons, a stricture in the duct, a tumor, cancer, etc. She says people get into the routine of every 4-5 weeks getting them replaced and when it's that routine she allows the mid level angio guys to do that, but that she went ahead and made the appointment for Christi on a day she was going to be there because she wanted to be the one doing it today.

We thanked her several times for seeing her that late night a few weeks ago and told her we were really grateful for her help and her information sharing. She told me to go get lunch and then wait in the room for Christi and that she would try and call when she could. We asked her about the pancreatic stent and she wasn't too concerned about that.

1:40 p.m. Dr. Harker just called me on my cell phone.

Christi will be up soon. She said she looked very hard for the stones and didn't see any definite signs of any. She said there was some debris around the ampulla and that it was very very tight for some reason, not sure why. She has a tube in it to help the drainage and she did balloon it to help enlarge it some. She is going to see Christi back again on next Friday. They are going to try and cap the catheter and teach us how to flush it. She said 5 cc and not "in and out" but only in. She said to do it slowly. If there's any pain, or leakage around the tube to stop and replace it with a bag. Any fever, replace it with a bag, take the antibiotic and call them in the morning.

She said after next Friday if there is still a problem with the ampulla they will call in Dr. Batista and he will probably work from the other end and possibly place a stent and then her (Dr. HArker's) tube might come out.

I asked about Christi's activity with the kids and she said she'd prefer she not do any heavy lifting and that no bending over with that tube in her while lifting 15 to 20 lbs. She knows it's hard with kids... but she should have help.

1:50 p.m. Christi arrived! She's sort of sleepy but still trying to talk. The surgical nurse gave me the directions from the doctor written on a little card. In 24 hours we get to cap the catheter if she's feeling good and no fever. We have to flush the bilial tube with 5 cc of saline once a day; do a push slowly and if there's any pain replace the cap with the bag, take an antibiotic and then call in the morning.

The tube that was in there before was 8.5 measurement and this tube is now a 10; they can go up to 14.

Her next appointment is on Friday 4/15 at 12:00 noon where Dr. Harker will go back in and make sure the ampulla looks good and there are no stones or debris in the duct. I asked the nurse why the ampulla might be so swollen and he said maybe scar tissue. I also asked if the tube would be strong enough to not be closed off if the ampulla starts to close again, and he said it would hold it's shape. The question will be if the ampulla remains open so that the bile can flow. There's no knowing why it's so tight and what made it so, but it could be scar tissue.

I need to ask about the dressing and what we do to change it, etc. Maybe we won't since she's going to be seen next Friday.

That's all for now. She's in some pain so the nurse has been called. No Nausea, knock on wood. She's in tears, because she's tired of this all and was hoping it would end, but I see this all as good news and some real information and the light at the end of the tunnel. I'm just glad she's safe!!!

Love,

Fawn

PS--We are supposed to be here for two hours in recovery so we'll see how that goes."


Turns out recovery did not go very well. Christi was in soo much pain. She didn't want to go home. The nurse tried really hard to convince us that we should try and "manage" the pain and that she could get us heavy drugs to help with that. We just looked at each other and it was hard not to roll our eyes. Christi asked if I would say a prayer as she was trying to make her decision and it was about all I could do to get through it. I have been very worried all along and concerned that my knowledge is very inadequate and I didn't want to contribute to her not getting better by making poor decisions. But I knew I was the one who seemed most checked in most of the time and it was impossible for her to make all these decisions being in so much pain and on so much pain medication. Even being with her in the hospital and listening to the doctors, it was difficult to navigate and weigh what was being said and proposed for her treatment. We did eventually end up at home but she was in incredible pain. We did what we could for her as far as giving her a lot of the pain meds. But I was feeling so badly for her. I didn't like it at all and was worried we had made the wrong decision. It was very sad for me to get her into the car, knowing she didn't want to go home because of her pain.

We made it out past the first driveway, turning onto the road when she told me she was going to throw up. It didn't take long and I knew it was going to be bad for her so I pulled over and helped her out and she spent a few minutes throwing up. After the surgery they had given her a turkey sandwich and cantaloupe and a few cookies. She devoured them, but she pretty much threw them up before we made it out of the parking lot. I was concerned because I knew she'd be taking oral pain meds and we were back to the same problem as before. We got home somehow, but she was in a tremendous amount of pain. I called the nurse to let them know she had thrown up again and they spoke with Dr. Harker and said it was normal and not to worry. But the pain didn't seem to match what the Dr. had told us she would be experiencing. I kept very close watch over her all night and made sure we got the pain meds into her, but she could keep nothing down and was just exhausted. It was especially sad because she had felt so good the last two days!