Whirl wind day 2!Jillian did not sleep well the night of the 18th. Doctors started coming in around 6:45am. They checker her out and looked in her ears. She still had so much wax they could not really see in them, but she hated them touching them...
Rounds happened mid morning and Dr. Adrian Miranda was the floor doctor right now. I liked him a lot because he really seamed to know his stuff. Rounds to me is kinda funny because it is interesting to watch the residents report to the attending. The current resident was timid and did not look at Jillian's case too much before rounds so I helped him out. The attending asked some questions about Jillian. I explained that she pukes hours after she eats sometimes and I finally had a good conversation with someone about the possibility of delayed gastric emptying. We talked about the Fundo option that surgery had brought up the day before. The GI dr was on the same page as I was about it. He said we know the J feeds work so lets let he get bigger and figure a few things out before we do that. He took it as a teaching moment for the students. He asked what at the three main times you dont want to do a fundo, they did not know so he helped them: 1. if they have cp (Jillian does not), if they have a mitochondrial disorder (we still have not ruled that out), or if there is anything neurological going on (we go for an EEG on wednesday). That puts her 2 strikes down. He said that if the later two end up to be true of Jillian and we did a fundo that puts her at high risk of it failing or her getting gas bloat syndrome. Gas Bloat has a lot of complications with it! It means all the extra gas builds in the stomach making no room for food and a lot of pain. He said it is a nasty disorder that is painful to watch. Right now I feel like with all the unknowns of Jillian we are not ready to take that risk when we have something that works.
We talked a little bit about her vomit. She can eat something and puke it many hours later. The dr said that 1/2 of you food should be digested out of your stomach an hour after you eat it and she should not have any to come back that much later. We talked a little bit about delayed gastric emptying (another reason to not do a fundo) and what we would need to do to check for that. We decided that at somepoint we should test for that.
We then talked about the test scheduled for the day: the PH study. He asked the team why you do a PH study. They said to see reflux. He said that with Jillian's case we know there is reflux. He talked about the reasons why a ph test is best and that for Jillian it is fine to give us some baseline numbers but that it would not really tell us anything but since we were stuck there anyhow we might as well do it.
We hung out for a little bit and then someone came in to place the ph probe. It is kinda like an NG tube with sensors. As she was telling us about it the attending GI walked in. It seams that she was trying to do the test out of the way of prodacall and there was a little tension in the room them. His partner left the room, came back into the room, the two doctors then left and the first woman continued. Then they came back in the room and asked to speak to the woman. During this time the woman from Child Life came in and asked if we needed anything for Jillian and said that we had made a good job making the hospital room like home. She left and my in-laws came in to visit. Then the doctors and the woman came back in and explained that they would not be doing the test because we would be sitting in the hospital just for the test and keeping her on IV fluid when she did not need to be and that they would be placing the NJ back in and we would be going home. I have a feeling they figured out during that time that Jillian would not fit into the OR schedule that day. Also, the hospital does not place NJ tube on the weekend so if we did the ph test Jillian could not get the NJ tube put back in until after the test was done. Well the test takes 24hrs and that would have made it done part way into Saturday. We would have then had to keep her in the hospital on IV fluids until Monday. We decided since the test was not a big deal to not bother.Around lunch time they came and got Jillian to place the tube in intervantional radiology again. Jillian was not a happy person about having it placed again and was very crabby. We took her up to the room and brent went to get food from the cafeteria. She and I were on the floor playing while I ate my lunch and in one fell swoop she pulled the tube part way out and shoved it back in. I called for the nurse. The nurse and a med student walked in the at same time. The nurse started helping and the med student had come in to see about discharging us be decided that we needed to go back down to make sure the tube was still in a good place. About 40 min later we went back down. Jillian had actually pushed it into a better place then it was before!
We went back up and the dr came in and asked what we needed to go home. I said I wanted to make sure the tube worked before we left, have her ears checked again and talk to the surgeon. She looked in her ears and said they were still too full to see anything. She said we could do a tube try for a bit and agreed that was a good plan and said that she was not sure if the surgeon would have time for us but that if her did not she would have him call us.
Overall it was a long day with her. She did not sleep much at night nor during the day. We did have some happy time with her new toy though and she did like not having a tube in her nose.
Now we wait for the phone call again... I just keep reminding myself the HE must have a plan in all of this timing. There has to be a reason!
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