Another long day
Our day at Columbia was long. We got there at 9:00 and didn’t leave until about 4:00. I’m going to just stick with the facts because I’m so exhausted I can barely see straight, but we also learned a lot of stuff and I really want to communicate it. We met Dr. Kato who was an hour late to our meeting, but we couldn’t even get mad at him since he’d come straight from the O.R. where apparently he’s spent the last three days.
He wants Ana to have another MRI to make sure that there definitely not a mass on the right side of her liver (this was Dr. LaQuaglia’s question too – and his ultimate conclusion was that there was tumor on this side). We agreed to this, but we still want to get Ana listed for transplant immediately which will likely mean tomorrow.
If the right side of her liver is clear, Dr. Kato feels Ana is a candidate for ex vivo resection. This is the surgery where he removes her liver and operates on it outside of her body then essentially transplants her own liver back into her body. There needs to be a living donor ready and waiting in case Dr. Kato gets in there and discovers the tumor isn’t resectable for some reason. I’m pretty sure I would be this donor. At least, I know our blood types are compatible but I don’t know what other tests need to be done to make a match. My size is about right too – I’m 5’1 and roughly 138 lbs (ouch!) but that’s still small enough to fit Ana’s body in terms of liver size. Ana doesn’t want me to do this for her, but if I am a match then there is no question that I will do it.
Still, Jim and I both feel transplant with a cadaver donor is the more likely option. She’s getting listed tomorow (or this week), but she may not be as high up on the list as we’d been told at Westchester. This is because her liver function is good, and so the doctors at Columbia need to request an excetion to the transplant board UNOS) explaining Ana’s very unique case so that she can get higher up on the list. It’s a point system called PELD for children under 12. The fact that she’s 11 makes it more likely that she’ll get a transplant sooner.
Meanwhile, the Pediatric Hepatologist took a look at Ana’s broviac site and was not happy with the angry red rash around the site. She called Dr. Hochberg and requested the Broviac be removed, which could take some time. Dr. Hochberg is trying to get in contact with the surgeon who placed the Broviac to see if he is available to remove it in the next couple of days.
The culture Ana got at the E.R. on Saturday came back negative, which most likely means Ana does not have a line infection. However, they did the culture incorrectly – they only drew blood from one line instead of both lines (Ana has one line coming out of her chest, but it splits into two separate lines that end in lumens, which each have an access port for administering medication and drawing blood.
Both of these lumens need to be cultured and both need to receive antibiotics in order to ensure that any bacteria is killed. On Saturday, only one lumen was cultured and accessed – meaning bacteria could still live in the other one. I asked Dr. Hocbherg about this and she said they’ve had problems with the E.R. culturing only one lumen in the past (let me just say it was Jim that caught this – I wouldn’t have EVER thought of it). Ana had a culture taken correctly at Columbia today, so now it’s another day or two of waiting for those results.
Finally, it looks like Ana will need to go back to Westchester tomorrow so Dr. Hochberg can examine the rash around her port and possibly (probably) admit her. We’re hoping that the Broviac can be removed while she’s admitted, and that she can also get the MRI Dr. Kato needs. This could potentially mean a 5 day hospital stay since the MRI will need to be done with Ana under sedation and they don’t do these over the weekend.
Ana is crushed. She wanted to go to school tomorrow. So what we may do is send her to school with the port covered liberally with gauze and then she can go to the infusion center either after school or Friday. She had no fever today and there’s still no pain around the port. Just lots of itchiness. It’s possible she’s just having an allergic reaction to the Tegaderm (the clear dressing that is placed directly over the port). Many people do and Ana has sensitive skin.
Jim’s going to take Ana in tomorrow so I can work and spend some time with Emily. I miss her. She has her Karate belt test on Saturday and I really, really want to be there for that.
Oh, almost forgot, we got one bit of GREAT news. We can stop the Lovenox shots for now. They don’t want Ana to be on blood thinners once she’s on the transplant list. They also felt she likely does not need the shot anymore at this point. She will need it after surgery, but just for a week or two! It was SO WONDERFUL to break this news to Ana today.