Today is her 1 month post transplant mark. She didn't sleep much last night again. She's still very nauseous. Her counts are looking better today. Her WBC is 5.620 (normal 4.8-10.8), neutrophils 3.85 (normal 2.2-7.6). Her platelets remained stable today at 33. Most importantly, her bilirubin is down again today. It was up to 21 a few days ago, it's now at 17.3 which is slightly lower than yesterday. Hopefully this trend continues. Her lungs seem to be slowly improving, they're gradually lowering the ventilator settings and trying different modes that allow her to do some of the work but with the nausea it's been difficult. They think the nausea is from an ileus which means her intestines aren't moving things through. The good news is that it appears on the x-ray to be just air. She's full of air and it's having a hard time moving through. That backup and pressure is causing the nausea. You'll notice in the pictures a tube going up her nose. That's a nasogastric (NG) tube. They use that to give her nutrition but it also has a vent that allows air to escape back up, like you do when you burp. They can also put suction on the end of the vent and help pull air out. They've moved the nutrition to IV because of the nausea and ileus but they're still using the NG tube to help the air escape. Later today we're going to try getting her in a chair again. Moving around will help move things along in the intestines.
They're going to do a liver biopsy, hopefully tomorrow, that should show if there's any VOD or any other disease that could be affecting the liver. If it shows no VOD, she could come off the defibrotide which would be another drug that could be causing her some problems. It could also be the only thing helping the liver so they want to do the biopsy to confirm. The biopsy isn't as bad as it sounds, they actually go in through a blood vessel from the shoulder area and travel down the vessel with a wire until they reach the liver. Then they take a sample from the inside. This minimizes risk of infection and bleeding.
Her nausea has gone down a lot today. She hasn't thrown up since this morning. It's uncomfortable when they move and suction her so sometimes she has a gag reflex. She did sit up a little today which should help her digestive system. We haven't made it to the chair or bed side yet, maybe later. Overall she's having a relatively pretty good day.
Dawn has been having a hard time breathing. Her respiratory rate has been up in the 60's for the last 4-5 hours which isn't fun. It appears the NG tube came up slightly so it wasn't venting properly and her stomach became very large, pushing up against her lungs. She also didn't get dialysis today so it appears the fluid around the lungs are affecting her too. There was a brief scare because this came about suddenly and her belly became distended. Her platelets were also low today so there was some concern that something was leaking somewhere. They did a chest x-ray and an x-ray of her abdomen. Everything looked ok except for the placement of the NG tube. They tried a few things on the ventilator to try and get her rate down but nothing worked. They also tried a saline flush of her lungs to clear up any blockage. So far nothing has worked but they're giving her a bunch of medicine to try and get her to sleep. She's been mostly awake for the last three days and two nights. While she's sleeping they're going to change the vent settings to try and get her lungs to expand. Hopefully when she wakes up she'll feel better and they can do dialysis early in the morning. She had a pretty good day until about 6pm.
Thursday, December 25, 2008