Casey had a pretty rough night and morning. She seems to be having some tummy issues. She HATES poops. She usually has just one a day. Between 8PM yesterday and noon today she had 5 or 6 (a lot for her). each one got her a little more worked up. Between that and the aggressive pulmonary/respiratory stuff she was not a happy girl. Sadly, a bad night and morning were reflected in her xray today. It is not as bad as it was before, but it is worse than yesterday. The doctors are worried that she is headed back in the wrong direction. The respiratory treatments have been stepped up a little more today. Luckily they worked it so that she gets them all at once now and then gets a break in between.
Casey is resting now. She was up all night. Shortly after lunch she finally started to settle down. She seems much more comfortable now. Of course at the height of her discomfort is when all the doctors come by, but what are you going to do. It seems like everyone showed up at the same time today too. She had the xray tech getting the last GI picture, a bunch of doctors, respiratory therapists, her nurse with medications, some people from PSA (our home nursing agency) and a big poop. To top it all off- this happened 10 minutes after Tim left to go pick up something for us to eat. It was a crazy in here for a while today.
At 8AM Casey had an Upper GI with bowel trace done. They put some barium in her tummy and took lots of pictures to see how everything is working down there. Of course with an already upset tummy this was not the smoothest nor easiest procedure. She got through it and we were able to stay with her the entire time. The doctors just stopped by to discuss the results. Casey refluxed almost immediately when they gave her fluid. This makes the doctors very weary on feeding her through her tummy. They were talking about trying to give her some food in her gtube over the weekend. Now they do not feel that is safe for her (especially with her lungs already weakened).
It looks like we may be placing a GJ tube in the morning. This will allow Casey to get some food. Instead of going into her stomach it goes in at a later point of digestion (the Jejunum aka small bowel).
We still need to get a CT scan done of Casey’s abdominal cavity. We have to wait for the barium they gave her today to fully get out of her system. Ideally we would have preferred the CT first then the GJ but it looks like the barium has changed the order a little for us. Our current plan is to get the GJ done tomorrow. Then use the weekend to continue to make progress with Casey’s lungs as well as to slowly start feeding her. Then Monday we should be able to get in for the CT. After the results of the CT we will sit down with GI, Surgery and probably a few others to discuss our options, risks, benefits, etc. I am sure Tim and I will need to sit on that information for at least a day or two. Hopefully we will be able to make the decision next week and then start working toward what ever it may be. Of course, if anything should come up over the weekend this plan could change completely.
They took some of Casey’s tummy contents to the lab. They are checking her acid levels. She has been on antacids forever and they want to see how effective they are. They just sent the sample off so I have no idea how long that test will take. I am not sure how much of an impact this will have on the big picture. It is nice to see if we are over/under medicating her though.
Casey had a surprise visitor today. Her Water Therapist, Margaret, came by to say hello. It was really cute. Casey was just laying here half asleep half awake. When she heard Margaret say hello she perked up and threw up her hands to greet her. I think Casey misses the pool 🙁
We will post more tomorrow after the GJ is done. As always, thanks for keeping our little princess in your thoughts and prayers.
