Well, today started out with me calling to check on Claire at 4 am and as soon as the nurse started talking, I knew something was not right. Of course she said Claire had blood in her stool at the midnight assessment. The doctors ordered an xray and labs and they all came back normal. But this time they didn't take her off of her feeds. They just wanted to see what would happen.
Claire had several more stools with spots of blood in them. So the doctors talked to GI and got her in for a sigmoidoscopy today. That test is kind of like a colonoscopy, just not as evasive. It lasted probably 5 minutes and they came out with a good answer for all of the blood. It's called Lymphoid Nodular Hyperplasia. Basically Claire has swollen nodules in her sigmoid area of her colon. This could be caused by a food allergy. They get irritated and bleed. So the doctors are thinking that this has been the case probably the whole time. She probably had a allergic reaction to the breast milk which caused the original inflammation and irritation. Then switching to the EleCare made it less irritated, but the more she drinks, the more she stools, thus irritating the area and causing little spots of blood. The GI doctor said it could take a few months for it to completely heal. So we just have to keep watching it. So that was great to finally get an answer to these bloody stools! They also biopsied the spots to verify their diagnosis. It will take a few days to get the results back.
The liver CT was also done today and we hope to get the report and information back tomorrow from the doctors. We also met with the liver surgeon today. We didn't really get any definite answers just because they are not exactly sure what the cysts are. There are several things it could be and until they do a biopsy or totally cut the cysts out. The CT scan will help the doctors see where the vessels are in the liver and how they can surgically remove the cysts and/or do the biopsy.
The surgeon said they originally thought the cysts were simple cysts and could be drained to get rid of them. But now after the MRI, it shows the 1 large cyst and a smaller cysts in the right lobe of the liver and then about 3smaller cysts on the left lobe. She is pretty sure once removed, they will not come back if they are the mesenchymal (sp) hamartomas like they think they are. They would not be malignant if they were hamartomas. The other thing she mentioned that it could possibly be would be poly cystic liver disease. But she really is not leaning that way. Usually with this, you see cysts in the liver and the kidneys, and she doesn't have any cysts in her kidneys.
If they do a biopsy, they could also test it for genetics to see if it's something that would happen again if we had any more children. We also asked about if the big cysts could rupture. She didn't really think so unless there was a traumatic event like a car accident. We asked about if a liver transplant was a possibility. She thought we were getting ahead of ourselves with that part of it. The surgeon said that they had done about 8-10 liver resections (like they would do for Claire) in the past year.
If they send Claire home without doing anything, she said they would schedule some testing and scanning of the liver if it was going to be months before they were to do anything. The surgeon said she wanted to consult with the cardiologists and radiologists before doing or deciding anything, and since it's the holiday season, it will probably be hard to do until the first of the year. So it may be January before anything is done.
Claire also passed her car seat test today! She basically had to sit in her car seat for 90 minutes without having bradys, desats, etc. She did GREAT! So she's ready to go!
So it's still a wait and see about what will happen with the cyst and about coming home. Just taking one day at a time!
Thank you for all of the prayers for Claire. They are working!!
The Scott Family